Dec 15, 2014

merry christmas to all! plus we're doing this fundraiser...

Some of you might remember how we did a fun little fundraiser a few years back to help raise money for the incredible organization that is helping to find a cure for Isaac's disorder. This year we actually decided to send out a letter to some friends and family members.

It is SO hard for us to ask for money from you guys. The thought of what people might think getting a fundraiser letter from us was slightly embarrassing and very humbling.  I don't want to be that person. But you know what? We did it. For several reasons.
1.) We really do believe that this organization is doing GREAT things to get us closer to curing Isaac's disease, and LOTS of other cancers as well. We have worked really closely with them since Isaac has been born and we can't say enough incredible things about them.
 2.) Daniel and I have personally been learning more about what it means to be generous people this past year. He leads the way in this, and I'm learning to be a more cheerful giver along the way. Whether we are able to give out of abundance or...well, not abundance.  I'm learning that it can actually be really fun to give financially towards something we care about. Even if what we're able to give seems hardly worth giving. So if you're one of those people that gets a thrill out of giving - this could be for you ;)

Usually I'm the blog writer, but this year Daniel did the writing for us and gave a little past/present/future update with Isaac down below. If you just want a family update, I'm posting this for you. And if you feel like you would want to donate any amount to the Fanconi Anemia Research Fund, that's awesome, too! Plus we got some really fun, 'around the house' Christmas photos taken by an awesome friend, and I wanted to share those, too!












Friends & Family,

Happy (late) Thanksgiving & (early) Christmas! My name is Daniel Coleman and I have the privilege of being Isaac Coleman’s daddy. Receiving this letter indicates that you are someone who has already expressed care for our son in some way, and for that we are thankful. Because of your care, we’d like to provide you with an update on Isaac, as well as a plea for your help.

Isaac’s Past
As you may know, Isaac’s first 2 years of life were pretty harrowing. After discovering swelling on his brain during Mindy’s 19-week ultrasound, we started preparing as best we could for the uncertainty of what was to come. Born in October 2011, Isaac weighed just over 3 pounds and needed lots of immediate attention. He underwent several surgeries & tests within the first 24hrs, including a brain shunt and a colostomy. About a month after birth, with Isaac still in the NICU at the Levine’s Children Center in Charlotte, we received the bittersweet diagnosis of Isaac’s genetic disorder: Fanconi Anemia. I say it was bittersweet because, on the one hand, we were relieved to have some answers to all of Isaac’s seemingly unrelated issues (missing radius bones & thumbs, fused kidneys, stage III kidney failure, imperforate anus, small optic nerves, severe hearing loss, hydrocephalus, small stature, heart abnormalities). But once we found out what that diagnosis would mean for our son long-term, it was a devastating blow for us as a family and a true test of our faith.

Isaac’s Present
Fast forward to now, 10 surgeries and countless follow-ups & therapies later. Isaac is a happy, lively little boy who daily lives up to his name’s biblical meaning of “laughter.” He just celebrated his 3rd birthday with a superhero party. He knows hundreds of words, talking about everything from his all-time favorite animal (walrus) to letting us know when his bone-conduction hearing aid needs the batteries changed. Even though Isaac still weighs just 14 pounds, he’s getting closer and closer to walking on his own, which is amazing considering he never crawled! He just started attending his first preschool class in November, in which he learns alongside several other hearing impaired children for a couple hours a week. Isaac loves getting out and interacting with other kids, whether it’s at our church, at the children's museum down the road from our house, or at our library’s weekly story time. He’s also very musical and is always scooting over to our record player to listen to Mary Poppins, Winnie the Pooh, Raffi or his “Jesus songs,” as he calls them.

These things may seem small & ordinary, but to us, they are HUGE. Isaac’s diagnosis was so rare and so variable that we really didn’t know what to expect for him developmentally. But to have this smart, handsome, energetic little boy in our home for 3 years is something we thank God for as often as we can. It’s easy to take the time we’ve had with him for granted, so Mindy and I are learning how to better seize each day and do everything we can to provide a long, meaningful life for our son.

Isaac's Future
As much as I’d like to end this letter here and say everything is behind us, it’s not. Frankly, Isaac’s future is not bright, and this is why I’m writing to you now. Although he appears to be healthy and has made it through his early battles like a true fighter, his years ahead will be his toughest. Despite what you can see of Isaac’s disease on the outside, Fanconi Anemia is first and foremost a genetic blood disorder. Basically, Isaac has very weak blood that will eventually fail, usually during the later childhood years. He will require a risky Bone Marrow Transplant to totally reset his blood system. And even if he’s able to get an adequate genetic match (preliminary searches were less than encouraging) and the transplant is successful, he’ll face many challenges for the rest of his life. Statistically, Fanconi Anemia patients are fortunate to survive into their 20’s, due to both the complications of the transplant procedure itself and the extremely high susceptibility to cancer post-transplant.

So today, on behalf of my son, I’m asking you to consider supporting the Fanconi Anemia Research Fund (FARF). Not only is this organization our best hope at finding a cure for Isaac’s disease, but it has been a constant source of encouragement and support for our family. They’ve been by our side every step of this journey and we thank God for the work they’ve already done to give families like ours a little bit more hope for our kids’ futures. Any gift you’re able to give towards the furthering of this work would mean so much to us. Thank you for your love for Isaac!

About FARF

Founded in 1989, the mission of the Fanconi Anemia Research Fund is to find effective treatments and a cure for Fanconi Anemia and to provide education and support services to affected families.

-Funded $700k of new grants in 2014, supporting research of FA cell protectors, genetic therapy, early cancer detection, DNA repair and other relevant areas

- Hosted 23rd annual FA Family Meeting in Maine (57 families, 11 first- timers)

- Hosted 26th annual Scientific Symposium (210 scientists from 17 countries)

- 97% of funds come from fundraising of affected families, with 88 cents of every dollar going directly to research/support

- Received highest 4-star rating from Charity Navigator (2012)

Way to Give

Online: Fanconi.org (designate to Isaac Coleman)

Check: 
Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401

Phone: 1-888-FANCONI


6 comments:

  1. I love you guys! Giving for my best buddy Isaac!

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  2. Great letter and amazing pictures! Hopefully your heartfelt words will inspire lots of people to give! :) we love you guys!

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  3. Is there a way to donate directly to the family? Please email me afay333@gmail.com

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  4. Thank you for sharing this with us! It was a privilege to donate. I "designated" our gift in the comments box available on the paypal site.
    Hoping with you,
    Carol

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  5. Hi there, my name is Lisa and I live in South Africa. Friends of my have a son with FA. Gidion just turned 6 in December. Unfortunately, our brave warrior's platelets have fallen dramatically over the past few months and the doctors have put him on steroids. We are very grateful that the medical aid (medical insurance) is covering the bulk of the costs as they are very very high. About a month ago I shared with them your photos from Camp Sunshine and we are now on a major drive to raise funds for them to fly over this year and attend. There is little to no support for FA kids in South Africa and I personally believe that Gidion will love spending time with kids like him and his parents will have the opportunity to meet, talk and learn from parents who face similar challenges to them. I may not be able to donate to your fund because I am donating to theirs but I did want to say thank you for sharing your story.....it reached a family in South Africa who needed to know that they are not alone. Thank you.

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  6. How adorable Photoshoot! Your kid is very sweet. This photo session was truly inspiring for me. Actually my little one is going to turn one soon so I think it is a perfect time for family Photoshoot. Very soon I’ll find a good event venue Chicago for his birthday party plus photo session.

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