Wednesday, November 30, 2011

The Gift of Hope

Unofficial drum roll please...

Our unofficial total for Addi's research fundraiser is over $2000. 

Between the generous work over at Katie Wells Photography and our friends and family that have donated directly to IFOPA I think that we have raised at LEAST that much. 

This melts my heart. There are so many good people in the world.

When I hear the grand total from IFOPA in the next few days I will let you know and we will start dishing out the gifts from Addi's Drawing From the Heart!

People have been asking me how our trip went. They have been asking me how we are feeling about things. The answers:

We feel blessed. We feel hopeful. We feel loved. 

A few dollars here or there may not have seemed much to you, but it means the world to me. Just imagine that your donation is paying for a researcher to get one more hour in the lab and that extra hour is when they see something that leads to a break through... 

Thank you so much for your gift of hope! 

{Our Family in Camden across the river from Philadelphia}

Sunday, November 27, 2011

Guess what???

You are a winner. You are a worthwhile and wonderful person. You have my gratitude for coming to Addi's blog and if donated to Addi's Drawing from the Heart or even passed the link along to your friends, you are an angel. 

I am so touched at all of the wonderful vendors and drawing donors that opened their minds, hearts, and wallets to the FOP community and are helping them in every single penny donated. 

Our sweet little drawing has ended. I am reminded by it how compassionate and kind people can be. We will be announcing our drawing winners as soon as we get the donor list back from IFOPA. 

Thank you so much for everything and come back soon. You are are a winner all around but you might have won even more than you think. 

Saturday, November 26, 2011

More Zumba Love from Ashley Curry

I have been so touched by everyone that has been so willing to help with Addi's FOP research. Ashley Curry came across Addi's story and was touched too. She has donated a month of Zumba classes for one lucky winner and for another winner a Zumba gift basket with free classes, Zumba bracelets and a Zumba shirt! Thank you so much Ashley!! Donate to Addi's Drawing from The Heart to snag these great prizes and get Addi a little closer to her cure! 

Thursday, November 24, 2011

Applebee's... Yes please.

Three $10 Applebee's gift cards are up for grabs if you donate to Addi's Drawing From the Heart!

her tunes, my tunes, itunes, your tunes...

Addi's tunes consist of of Yo Gabba Gabba dance mixes.

My tunes lately have been more on the inspirational side. Thank you Lady A.

This iTunes card could be your tunes if you donate to Addi's Drawing From the Heart!

Sunday, November 20, 2011

Where the research money goes...

This is a fluorescent microscope {Or so google tells me} and we saw one of these babies in the FOP lab. Our tour guide Ruth was understandably excited about this new tool as they are hard to come by because their price tag is over $150,000 dollars. Yes there were four zeros after that one-five. This machine is worth more than my house in today's market.

Ruth showed us how she processes the blood to gather cells for growing new cells for the research. She showed us where they stain the cells and examine them with the fluorescent microscope. We saw where they examine the mice and met a few of the other researchers. We heard about an awesome program called the "Tooth Fairy" program where we will send in Addi's baby teeth when they start falling out and they will be able to collect stem cells from the pulp in the baby teeth.

We were able to see and meet so many wonderful people in the FOP lab. People here are really excited about how close they are to answering so many questions. One thing that Dr. K said while they are there is that they finally have the FOP mouse they need and the other tools they need to start testing compounds for the treatment of FOP. Read more about our visit with Dr. Kaplan here.

When we were there they were all so excited with how hopeful things are. We got to meet Dr. Eileen Shore and she was delightful. She is a hard worker that is making a difference and I am so grateful for her efforts. As I met her and members of her team I kept asking them all the same thing to see what answers I would get. I told them,  "FOP families want this cure to get here SOON. What do you need to help speed up this process?" The answer they gave me is "people." They need people behind tools and spending time at leaving no stone unturned so that Addi gets a safe and effective treatment.

Addi's drawing from the heart is going toward research funds and more specifically research people because that is what they need. I am sooooo happy to announce that Katie's photo sessions that were held in conjunction with Addi's fundraiser rounded up $1,500.  We are looking forward to hearing the grand total from IFOPA at the beginning of next week and announcing the winners of our drawing. If you haven't had a chance to donate yet there is still time!! Donating is easy. Just click here and fill out the form, pay with credit card or paypal and then you are done.

I am so grateful for the kind hearts that are trying to help my baby girl. We are so close to having the answers and finding a way to protect Addi's future. Something that I loved about Addi's appointment is that Dr. Kaplan kept getting on the floor of the examination room and playing with Addilynn. He really has a love for children and enjoys entertaining them. After another one of these "play sessions" Addi was sitting in his lap when he looked up at his intern and said, "We have got to keep Addi this way." Later, Ruth said that it was so good that we came to the lab because it gives the researchers someone to think about as they are sifting through data.

The researchers working on the project have the tools and the motivation then need, but they need more people. Many hands make light work. Two heads are better than one. A one dollar donation from 50 people is $50 dollars that gets someone else in the lab. Whether your donation is big or small it makes a difference. Please donate to Addi's Drawing from the Heart. Thank you from the bottom of my heart.

Friday, November 18, 2011

Meeting The Miracle Man

This is our family with Frederick S. Kaplan.

He is one of the kindest, smartest, most AMAZING people I have ever met.

We started today getting lost in Philly. This place is insane. Beautiful, but completely insane. People literally park in the turn lanes and cut you off like crazy. We ended up getting to our appointment 5 minutes late when we left our hotel an hour early but we were happy to get there in one piece!

Once we were there we were warmly greeted by K, Doctor Kaplan's assistant. She was sooooo nice and really helpful in giving us lots of literature to read up on for after visiting with Doctor Kaplan.

We began our visit and Dr. Kaplan really wanted to get to know us. He asked about our family and Idaho and was just really genuine about wanting to get to know us.

Then we got into the questions:

{The following is based on the memories of today's appointment and the understanding that I got during our meeting. Not everything here may be 100% correct because of my own misconceptions. If something is off here, let me know!}

Q: Why do some kids have really misfigured toes and some don't? Does this have anything to do with how severe Addi's FOP will be since her toes aren't too bad off?

A: He said that he needed to be careful how he answered this question. He said that Addi has the classical variation of FOP which 98% of FOP Patients have. The other 2 percent have one of two other variations where one has no big toes and very severe FOP and the other has completely normal toes and milder symptoms. He also said that he follows 3 different sets of identical twins with FOP and that even though the children are identical DNA wise, their flare-ups aren't and it just kind of depends on how their FOP progresses. FOP is closely tied with our immune systems. If something goes off in our immune system and it causes inflammation it can become an FOP flare-up (ex: the flu). Since everyone's immune systems are different the toes aren't a good enough indicator on severity with the classical type of FOP.

Doctor Kaplan did a full check up of Addi and she looks really good. A lot of other FOP kids are born with other abnormalities in the skeleton and Addi looks really normal which is a great sign. We can't really tell if this is going to be mild yet but we know her case is not currently severe. Always looking on the positive side of things!!

Q: Why doesn't Addi get more flare-ups because she is so clumsy? How do we know the difference between a regular fall and flare-up type fall?

A: FOP goes through active phases and dormant phases. Right now Addi is probably in a dormant phase   {Thank you!!} but she has had a flare-up phase starting with her 6 month immunizations and THEN all those lumps she had all over her head at about a year old. We are really lucky that she didn't get another calcification in her right leg when I had her immunizations done at 12 months when I had them do the other leg because of the Myositis Ossificans! Dr. Kaplan said that 80% of injections result in FOP legions and that Addi can never have another intramuscular injection again. She is allowed sub-q shots under the skin but some immunizations can't be given that way so I am just praying that everyone immunizes their kids!

We really can't tell the difference between a normal fall and a flare up fall. Some people can get barely tapped and a flare up happens, some people fall off of a ladder and nothing happens. If the flare up is in a limb or near a joint we can do Prednisone but not if it is on the back. {Prednisone is a steroid that suppresses the immune system limiting inflamation} We will just wait to see if a flare-up comes up to see if we give it or not. The only case where we probably wouldn't wait to give it is if we were in a car accident or if she had some other very traumatic injury sending her to the ER.

Q: Do we put Addi in a bubble? How do we protect her?

A: We let Addi be a normal kid. We let her do what she wants but try to avoid contact sports. He said this is a lot easier in girls than boys. Addi should probably wear a helmet for most out door activities. She will probably need a modified bike one day and shouldn't have a real bike. When she goes to school she will need an aid to watch out for her and protect her at school.

Q: What causes the mutation? Where/ why did she get this?

A: This comes from a sperm or egg cell that has corrupted DNA. If a parent has a child with FOP there is a 1 in 300 chance of having another child with FOP as opposed to the 1 in 2 million that Addi is in.

Q: How painful is this?

A: It depends on where the flare-up is. There can be a huge flare-up on the back and it might not hurt at all because it has space to spread out. If it is in a limb it can restrict blood flow and has less space so they can be very painful.

Q: We have had lots of x-rays. Do we need to keep getting them to track growth?

A: No. Once FOP is genetically diagnosed there isn't really a medical reason for them. We might take some again if we go into a clinical trial but we don't really need them for anything FOP related.

Q: What treatment options do we have right now?

A: Right now there isn't any real treatment. Addi is on Naprosyn which essentially is Alieve. She is on 3ml twice a day. Doctor Kaplan said that this is very good. He said that this will limit inflammation without much side effects. We probably will need to do a blood test for her kidneys annually as a precaution but that this was an good choice as a preventative measure.

Right now there is a LOT of HOPE in the research world. One is medicinal with a type of medicine similar to Accutane that would keep FOP at bay and the other would be a medicine that follows the BMP pathways and turns the FOP Gene ACVR-1 off, essentially providing a cure.

The first comes from a study of four different molecules found in Accutane and one of the four molecules actually does shut down FOP. The problem with this one is that this molecule is owned by a pharmaceutical company that just lost a ton of money on the molecule because it didn't do what it was supposed to in some emphysema trials. I asked Dr. K if he needed letters compelling the company to do the research for drug development and he said not quite yet and that it had to go up to the upper management first. He said though that if he doesn't hear something in the next month or so he is going to really get on their case and then he might let us write some letters... He said he could have "bus loads" of people for them. I would most definitely be on one of those busses.

Accutane is that old Acne medicine that had all of those crazy side effects with deformed baby skeletons.  You can't take if if you can get pregnant. We know that ACVR-1 involves the creation of the skeleton in utero and that is why researchers were attracted to the drug. Even if this pharmaceutical company does this drug development there are still lots of hurdles to jump. We have to find out what side effects could happen in little kids like Addi. But they already know that the molecule stops the bone growth so this could replace prednisone in a few years if all works right. This is in the short term a hopeful looking treatment. Dr. K couldn't put a time frame on this but hopefully in the next few years.

The second treatment that Dr. K talked about is the exciting long term "proof of principle" topic of interest that was just recently published. This seems like it is going to be the silver bullet but it is a long way out. You can read about it here.

With both of these we don't know what the side effects are or how much you take or how long... There are too many variables to even begin to think about. The good news is that Doctor Kaplan says that they now finally have the tools they need to figure these things out and that is half the battle. Tomorrow I will try to write about our tour in the lab explain more about these wonderful tools. Doctor Kaplan says that we have successfully made the move from hopeless to hopefull.

Q: How does Addi's bad leg with the ossified legion effect the good leg? Should we get her into physical therapy?

A: No. Dr. K doesn't agree with physical therapy. Occasionally things can improve with it but more often than not it will do more damage than good.

The two things that are most effective as "therapies" are swimming in warm water and and singing. The warm water is protective and relaxing and great excersise for getting the muscles moving. Singing, especially when children are trained to use their diaphragm is actually really good in for preventing breathing difficulties later in life. The lungs are endangered by bone formation in the rib cage but the diaphram is generally free from those risks and serves as a good support system for getting more oxygen in the body. Anybody have a good voice teacher or swim coach for Addi? I'm thinking she is going to love both of these activities...

Q: Is there anything we can do nutritionally for Addi? Low inflammation diet with low sugars?

A: Not really. Dr. K saw a little boy for several years with some pretty severe flare-ups in his early years and then didn't really hear anything from him for years and years and years. He saw him again at an FOP  conference at age 18 and he hadn't had any flare-ups. Dr. K pummeled him with questions: What do you eat? What do you drink? What do you breath? What makes you different than everyone else? The answers-- nothing much. Did pretty much everything that everyone else does. FOP is just a very mysterious monster and we don't know what keeps it at bay.

Dr. K did recommend staying away from lots of sugar from a preventative dental standpoint. Cavities are very dangerous for FOP patients because the jaw can seize up.  Dental injections are forbidden.

Q: Addi's teeth? What can we do?

A: Brushing, fluoride, and sealants. Dr. K wrote Addi a prescription for sealants on her baby teeth. Usually insurance won't cover them unless they are on permanent teeth and my friend who is a hygienist says they run about $30 per tooth in idaho. Hopefully insurance will cover this now that it is prescription.  Prevention is key to the safety of FOP kids. Dr. K recommended Dr. Crowe who sees all of the FOP kids in the Philly area. She is willing to consult with any dentist of an FOP patient and can be found in the FOP treatment guidelines book.

Q: What about braces to create an overbite incase of jaw lock up?

A: Most FOP patients tend to develop an overbite anyway, but we will just watch her mouth as she grows. We really don't need to worry about that yet. An overbite is really useful for feeding if the jaw locks up.

Q: What do we need to do about check ups? How often do we need FOP check ups?

A: We just treat Addi like a regular kid. Take her in to our local pediatrician for her regular check ups and look at the regular things. If a flare-up does happen we should take her in and have her looked at and assess if she needs prednisone or not.

Dr. K said that he would love to see Addi every year but because of the distance involved knows that isn't feasible and really isn't medically necessary. We might have FOP appointments for clinical trials in the future but those probably can go through our pediatrician or our doctor down at Primary Children's. He would like an email once in a while to know how she is doing... {I love this man.} and to maybe see us if he makes a trip out west.

Q: Who is Addi's Team?

A: Dr. Kaplan really just wants other doctors that are willing to collaborate with him to get Addi the best care she can get {totally love this man.} Her pediatrician, her dentist, Dr. Crowe, & and her doc at PCMC will be her "team".

I could go on and on and on about how wonderful this man is. He spent over 3 hours with us visiting with us on how life goes on with FOP. What doctor will visit with you for longer than 15 minutes, let alone nearly 4 hours??? Oh, and by the way, he also went and bought Addi some milk at the cafeteria because she was getting fussy and wouldn't drink water and then went with us to lunch and PAID for our lunch. I felt a little awkward about this but how kind is that?

This man has pictures of EVERYONE with FOP in his office. You can see the love oozing out of him as he talks about each one of "his kids". I asked him what got him into FOP. Apparently he was head of a clinic that dealt with metabolic bone diseases-- the stuff no one else wanted to deal with. He eventually ran into two older ladies with FOP and had them as patients. One day a genetic researcher came to him and asked him if he would collaborate on FOP with him. Dr. K wasn't to interested in the research aspect but this other doctor invited him to come look at a child who was being diagnosed with FOP and Dr. K said that when he saw this child it really struck a chord with him. He the older ladies to visiting the 9/11 memorial and knowing that what happened was catastrophic in nature. Seeing the child for him was watching the plane hit the towers. It made it real for him in a way that compelled him to do something about it. I am so grateful for this child inspiring Dr. K so that my child could be so blessed by this man's expertise.

It is now 1am and we have a long day of sight seeing in the morning... The point is this guy is a saint and an angel. He is the grandfather of the FOP family and is very involved in the loving and healing of all these kids. He is a face of hope. LOVE this miracle man.

Saturday, November 12, 2011

Bunnie Bows by Nellie Bray

I am still in awe at how kind people are. I know Nellie's Mom pretty well but I haven't had a chance to get to know Nellie yet.

This afternoon I took a nap. Totally needed it. When I got up, Daren had said that Cierra had brought over these adorable bows from Nellie for Addi's drawing. I am so touched that acquaintances and even strangers are doing what they can to help my little girl. People I have never met are donating to Addi's cause and every penny is going to be put to good use. I hope this drawing serves as evidence to those that need to be reminded there is still so much good and kindness in our world.

These sweet little bows from Bunnie Bows could be yours to give to your favorite little "bunnie" if you donate to Addi's Drawing from the Heart!

Friday, November 11, 2011

Things happen for a reason...

I've been having a hard time sleeping lately so rather than lay in bed I thought I'd write. So apparently there was a new episode of Bones tonight that covered FOP. I heard from my friend Ashley, and this struck me as funny because we had just barely watched an old episode last night of Grey's Anatomy that also covered FOP. How is it that you can go forever having no idea something existed and then suddenly see and hear it everywhere you turn?

Anyhow, Ashley and I got to talking about the reality of the story line on Grey's. I wasn't convinced. Season 3, episode 19 has a 41 year old female FOP patient suffering with internal bleeding on the verge of death, meanwhile her controlling 20 something daughter is building doll houses and yelling at nurses.

I think the reason this bothered me the most is that one of the "side effects" of FOP is Addi should not and cannot have children. Were these characters based on real people?

Myself, having suffered with infertility, aches for those FOP patients that wish they were able to have families of their own. I ache for Addi , and the knowledge that one day she and I will have a discussion about this topic makes my heart hurt. Women with FOP are discouraged from even thinking about having children for many reasons. Their child has a 50% of carrying the gene, if that child survives birth due to the high likelihood of preterm delivery and various other complications including extreme danger to the mother.


In August 2005 I married my college sweetheart. Madly in love, we couldn't wait to start a family and have every dream come true, one after another, just like we had planned. One month after another went by and no pregnancy. No baby. Lots of nephews and nieces, but none to call our own.

As a woman who placed a lot of value on motherhood this was an excruciatingly painful experience for me emotionally. I took fertility drugs that messed with those unstable emotions that made things even worse. Then after all of that, in January 2009 we got word that there was no more point in trying. We were "sterile".

Darkness. Anger. Bitterness. Rage. Grief. Sorrow. Pain. How could the one thing that we really wanted that was a worth while and holy pursuit be denied to us? How could God take this hope of becoming parents away from us? Especially when there are so many horrible people out there that neglect or abuse their children; we would have been great parents and given them a home full of love. I have tears in my eyes right now even just remembering how much pain I felt at this point in my life. I truly felt abandoned and betrayed-- and I let myself feel this way for three days.

On the third day, I kept feeling as though I needed to let it go. As though God was giving me an opportunity to give away the burden and the grief and just trust him. I was still so angry and hurt, but at the same time I knew that if I didn't do it, that darkness I felt could very literally destroy me. So, I let it go. I told the Lord, fine. It's yours, just take it all away.

He did and there was a weight lifted off my shoulders that I can not describe. The next day Daren called LDS Family Services, an adoption agency sponsored through our church. It was a bit of a whirlwind learning all about it but we found that it was most certainly the path that we were meant to be on.

We were told at the beginning that we would need $1000 up front to begin the adoption process and then probably another $5000 to adopt a baby. We thought that if we saved carefully we could have the $1000 together in 6 months and then maybe the rest in another year or two. It would probably take a really long time and that was discouraging. Little did we know that almost exactly a year from our "dark days" a little light in this world would come into our family surrounded by miracles.

The first of many miracles happened in April-- somehow within 2 months that money materialized in our bank account and we were able to start our home study.

The second miracle-- We began our home study right around the same time Addi's birthmother got pregnant.

Third miracle -- Addi's birth mom didn't decide to place until after our profile went online.

Fourth miracle -- She found us. She knew we were Addi's parents. She trusted God was behind it and she picked us.

Fifth miracle -- We weren't going to come until January 15th when the baby was due, but Brittani had a dream she came early, so we went a few days early and she was born the day after we arrived. I was in the delivery room and got to cut the umbilical cord. I had never cried happy tears like that in my life. All of that hurt and pain about not being able to create my own child melted away and was completely overshadowed by the fact that one sweet and beautiful girl had made me a mother by giving me her miracle.

Sixth miracle: All the legal things went smoothly. Addi's birth father was MIA and never signed. He told Addilynn's birth mom that he wasn't ready for any sort of commitment and disappeared, but we still lived fearful for over 6 months that he would swoop in and want her back. He never showed up and finally she was ours forever and for always.

Addi's adoption was nearly flawless and this really helped me see that God is in the details of our lives.

Now switch over to Addi's FOP. At 6 months old she had a run in with a blonde nurse that pretty much set her first FOP flare-up in motion with her immunizations. The results of that were worries about child abuse, boney cancer, and lots of medical bills. All of which were frustrating to say the least and I still had a grudge toward that blonde nurse, but the title of this post is "Things happen for a reason..."

When we first were learning about the possibility of Addi having FOP we watched anything we could find on this mystery disease on Youtube. One of the first things we watched was a story about a girl named Ashley and her experience with misdiagnosis.

If you don't have time to watch the video, essentially, Ashley had a flare-up that was misdiagnosed as a cancerous tumor and in order to take it out they also had to amputate her whole arm and shoulder.

When we first saw this video it had been approximately one year since the run in with the blonde nurse. {I think we never crossed paths again for a reason... there would have been words.}
Even though everything in the past year had been long and frustrating and confusing, I had a sense of gratitude wash over me. Because the blonde nurse screwed up and jabbed our daughter the wrong way, we were blessed to find out about FOP perhaps years earlier than when a full fledged flare-up like Ashley's occurred.

Addi was still misdiagnosed with Myositis Ossificans, but she has all of her limbs. She wasn't treated with radiation {Which almost did happen the second time they wanted to take it out}. We didn't treat her like a cancer patient. 90% of FOP cases are misdiagnosed, but of all the misdiagnosises and treatments to get, ours was pretty mild. Things happen for a reason...


So back to messaging Ashley on Facebook-- that same Ashley that has walked and paved the road for us so that FOP is just a little bit easier to deal with. Back to this business about having children and FOP. I watch the Kurpiel's story and in so many ways it reminds me of our own.  I kind of had an epiphany writing Ashley tonight. We may never know why we go through what we do, but they always happen for a reason. They happen for a purpose.

I went though heart breaking infertility, and while Addi has cured me of childlessness, I am still an infertile woman that hopes to have the opportunity to become a mom again. I haven't understood why my husband and I had to go through this, but trusted that for some reason this was my lot in life, but that I was loved by our Heavenly Father, and that he would always compensate the greatest joys for the deepest hurts.

Still, I haven't truly understood...

Until tonight, I got a small glimpse of one of the reasons of "why". Addi is a super loving and nurturing toddler. She LOVES babies and dollies and teddies and just loves to be a little momma. One day we will have that conversation about her future as a mother.  Physically she may never have the ability to bring a child into this world. She not only could pass the gene onto her child, but could loose both of their lives in the process.

However, from my experience in watching the miracle that is my daughter, I know that miracles follow this child wherever she goes. I will know how she feels when she longs for something she will never be able to do, but I will also be there to help her have hope in the cure that will allow her to live the life she wants to. The cure that will allow her to be a mother if she chooses, should God bring a miracle into her life through adoption or through other scientific advances.

God has a way of letting things come full circle and letting us know he is in the details. Things all happen for a reason.

Wednesday, November 9, 2011

Twilight Fan Prize Pack!

This year I made a wonderful new friend with a mom of one of my students. Nikki has actually helped me a ton with processing everything that is going on with Addi because her own daughter had a fight with a rare disease as well. Anyway, this sweet lady is known for having EPIC Twilight parties. I missed this last one for the upcoming Breaking Dawn Part 1 but I am definitely planning on coming to the next one. Nikki has donated a Mother/ Daughter set of hand crafted Bella Bracelets with charms for both Jacob & Edward, aroma therapy, and a candle warmer. Since I have my connections with Scholastic, I am also throwing in a new copy of Twilight with a movie poster. It can be yours if you donate to Addi's Drawing from the heart!

Zumba Class with Jodi Bozung!

Jodi's Zumba class is probably the best work out I have ever had in my life and by far the most fun! You move muscles you never even knew you had and you have a blast doing it. Three lucky Addi's Drawing from the Heart winners will get a free class with Jodi in Rigby!

Caramel Tree Family Prize Pack!

Confession: The Apple Pie caramel apple pictured above is my FAVORITE. This place is to die for and it keeps you coming back for more! Three lucky winners from Addi's Drawing from the Heart will win a family prize pack of five caramel apples from the Caramel Tree in Rigby. Valued at over $35.

A session at Yoga Bliss!

I sooo want this prize for myself! I have been wanting to try it out ever since I saw her on page on  facebook. Three lucky Addi's Drawing from the Heart winners are each going to get a free class to Yoga Bliss in Rigby. I might just have to buy a few classes myself! See you there!

Tuesday, November 8, 2011

Addi is so loved.

So our little "raffle" has turned into a BIG drawing! We heard today from IFOPA that legally we have to call it a drawing or else we need a license for gambling so donors are now officially donating to Addi's Drawing from the Heart. IFOPA has also given Addi her own tag line for donations when you donate! All of Addi's proceeds will go toward the lab at U Penn to help find a cure.

We are actually getting the opportunity to travel to that lab next week. We will be seeing Dr. Kaplan and learn more about Addi's diagnosis a week from Friday, and hopefully get to tour Dr. Shore's research lab too. As much as I wish Addi didn't have to deal with this, I am so grateful we have a great team of doctors and scientists on this. 75% of their funding comes from the families and friends of FOP patients like Addi. We are all important in keeping them going until we get a cure.

Our donors are doing a great job in furthering this cause and  are being so generous with this drawing! We now have over $500 in prizes and there are still more coming in. I have been so in awe this week of how much love has been shown toward our family and especially Addi. People's hearts are really showing their goodness to our family this week and we are so grateful to be surrounded by such wonderful people in this amazing community.

Katie has raised over $600 in Christmas Mini-sessions for IFOPA! She still has openings on the 19th if you are interested. Her pictures are priceless and donating with your heart will do more good than you know.

After some people expressed interest in donating later this month and our family's trip to Philadelphia next week, we have decided to keep our drawing open an extra week until November 26th. Winners will hopefully be announced Monday, November 28th, pending receiving our donor list from IFOPA.

Thank you so much for your love and support! Our hearts are full to the brim tonight!

Monday, November 7, 2011

Haircut & Style From Kyrie

Kyrie is offering to donate a haircut and style to Addi's Drawing From the Heart! Kyrie works out of the JCPenney Salon in Idaho Falls and does an awesome job! This is a $27 value. Thanks Kyrie!!

$35 in Pampered Chef Items!

Need some help in your kitchen for the holidays???
Amanda from Pampered Chef is donating these awesome items:

Classic Batter Bowl
Skinny Scraper
Pampered Chef Festive Holiday Cookbook

A package valued at $35! 

It can be yours if you donate to Addi's Drawing From the Heart!

1 Item from Premier Designs Jewelry - Up to $100 value!

Cierra from Premier Designs Jewelry has donated any one item from their catalog up to $100! There is some seriously gorgeous stuff in here and you could win if you donate to Addi's Drawing From the Heart!

Bow Board from Cierra & Shyenne

Cierra and Shyenne are great friends of mine and Cierra's daughter Brynlee is Addi's BFF! They make these adorable bow boards to show off and keep your little girls bows organized. It can be yours if you participate in Addi's Drawing From the Heart! Valued at $35!

Sunday, November 6, 2011

Define Your Space Vinyl

Define Your Space Custom Vinyl has donated a beautiful custom vinyl sign for Addi's Drawing from the Heart! Check out this awesome business for some super cute gift ideas!

$10 gift certificate for Manwaring Artisan Cheese

Manwaring Cheese has donated a $10 gift certificate to Addi's Drawing from the heart! You could be making some pretty delish dishes with this artisan cheese or just eating it straight if you win! {If you can't wait though head over there today... Maybe I will see you there!}

Custom Handmade Doll from Chrisy Lee Creations

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Chrisy Lee is donating a beautiful custom, handmade Dolly or Panda to Addi's Drawing from the Heart! This prize package also includes 3 outfits and a blanket-- a $68 value! Your little girl will LOVE this. Thank you Chrisy Lee!

Candy bar bouquet for your sweet tooth!

Addi has the biggest sweet tooth ever. Her new favorite words are "Trick-or-treat!" and for good reason! Our friend Sueanne is donating a candy bar bouquet to one lucky  Addi's Drawing from the Heart  winner!

1 Item from Lia Sophia Jewelry - Up to $100 value!

Stephanie from Lia Sophia has generously donated any item up to $100 dollars in value from the Lia Sophia catalog! This could be yours if you donate to Addi's Drawing from the Heart! 

Case of fresh Ellsworth Potatoes

We are blessed to live in the wonderful community of Lewisville, Idaho. Our family friends, the Ellsworths' have generously donated cases of the most delicious, fresh potatoes you have ever tasted right from their family farm down the road from our house. A case of these yummy spuds could be yours right in time for the Holidays if you donate to Addi's Raffle From the Heart!

$30 etsy gift certificate to Kirstikoo

 I met Kirsti in college and have long been inspired by her creativity and kindness. She co-runs a group called Sending Smiles which is an awesome charity blog {Check it out!}

Kirsti is also insanely crafty and has an awesome etsy store called Kirstikoo, specializing in adorable baby and children's items.

Kirsti has generously donated a $30 gift certificate to her store and it could be yours if you donate to Addi's Drawing From the Heart! 

Addi's Drawing from the Heart

Times are tough financially. Not just for us, but for everyone right now. 
Yesterday my friend Katie and I put our heads together trying to figure out how we could best help Addi and really, truly, the answer is a cure. Thats not available at the moment so our next best hope is research and research takes dollars. We know that everyone's purse strings are tight right now so that is why we are having a "Drawing from the heart".

It's a little untraditional in the sense that we are only "selling" one drawing ticket per person.


Because we want you to give from your heart. 
Sometimes I see auctions online for fundraisers and everything is going for hundreds of dollars which is wonderful for those causes. However, being a teacher I ususally don't have hundreds of dollars to contribute. With this drawing you just need to donate with your heart. We want you to know that EVERY SINGLE PENNY will be put to good use. If your heart says a dollar, then donate a dollar. If your heart says five or ten or twenty then do that.  If your heart is unsure consider these amounts:

{I pulled this from my friend Megan's FOP page and added some of Addi's info in}

$ 16 for a bottle of Naprosyn to limit the body's inflamation abilities. 
$ 56 Number of days a typical "flare-up" lasts
$ 200 Approximate number of known cases of FOP in the United States
$ 230 Approximate mileage between our home and Primary Children's Medical Center
$ 400 Approximate number of known cases of FOP worldwide
$ 499 Cost of a Newcon Professional Binocular Microscope
$ 641 Age, in days, when Addilynn was diagnosed with FOP
$ 1050 List price of the "Breezy 600" Lightweight Wheelchair
$ 1600 Approximate mileage between our home and Doctor Kaplan @ U Penn $ 2500 Estimated number of cases worldwide that have yet to be diagnosed as FOP (as with all orphan diseases, correct diagnosis can be elusive because so few doctors are aware of the disease.)
$ 5400 Approximate cost of an in-school, non-government subsidized person to watch Addi and make sure she’s not knocked over in the school playground!

$ Millions - Number of people with diseases that are helped by FOP research! Be the first to donate a million!

  Now, I don't expect anyone to donate millions, 
{But if you feel so inclined you are DEFINITELY welcome too!}
but I love that this research is going to help more than just FOP patients. 
Who knows someone who has osteoporosis or someone who has had a hip replacement and suffered through heterotopic bone growth? FOP research will unlock the answers to bone growth questions in general and help way more than just our own little Addilynn and other FOP patients. 

So are you ready to put your work boots on and find a cure for Addi?

Here's how:

  1. Click here and head over to
  2. Fill out the donation slip and donate to Addi's Drawing from the Heart. Donations go through Paypal.
  3. Make a comment on this post so I know who participated.
  4. Share this with your friends on Facebook, Twitter, @ work, and around your neighborhood. 

Please remember that even little donations are important. Over 75% of FOP research is funded through the friends and family of FOP patients like Addi. YOU are critical to finding a cure for this sweet girl.

...And as a bonus we are working on getting some great drawing prizes which will be showcased here through the next couple weeks. Please donate by 12:00 P.M. on November 26th to be part of the raffle. As soon as we get the final list of donors from IFOPA we will draw for the winners and announce them here at Addi's FOP Journey. Drawing prizes will be either delivered or mailed. If you are a vendor and would like to donate one of your products to the drawing, please email me at sblack{at} 

Thank you for your love and compassion. 


The Black Family

Saturday, November 5, 2011

November is for thankful hearts

I survived the week. I survived watching every trip and fall and bonk of my very wobbly 21 month old. This isn't a new thing--falling. The new thing for me is knowing that one day my little dare-devil's antics could change her life. But for today, I am grateful that some how her body is behaving its self when the genetic test says otherwise.

This week we people kept telling us that there were many prayers said and good vibes sent in our behalf. I am grateful for this. I really feel that this is helping us to keep walking in faith and avoid paralyzing fear.

Friends and family have been so good about asking what they can do to help and my friend Katie took action and hit the ground running with Addi's first research fundraising campaign. Katie is a very talented children's photographer and offered to donate a whole day's worth of photo sessions to IFOPA. She took some pictures of Addi today to kick off her campaign and gave me a sneak peak. I can't wait to see the rest!

Katie is also getting some awesome vendors to donate some fun prizes to a raffle for IFOPA research! I have also had some friends donate and we are so excited to be able to do something about FOP rather than feel completely helpless. Finding the cure may take years but each penny raised for FOP brings us that much closer. The sooner this cure is found, the sooner we can stop worrying about what could happen to this precious little girl.

I keep telling my self to have a good attitude. On Face book I am trying really hard to think of things I'm grateful for because it makes it easier to see the silver linings of all of those clouds that are hanging around us right now. It's not easy but it is doable. I am thankful for that. I saw this quote and it had meaning to me: 

In daily life we must see that it is not happiness that makes us grateful, but that gratefulness makes us happy. - David Steindl-Rast

Time to go to bed with a thankful heart. 

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