Meet Forrest Kelly.
He’s adorable, right?
He belongs to a friend of mine, and although he is exceptionally adorable, it is not the only unique thing about him.
After his first week of life it was evident that something was wrong. He was bleeding excessively from shots, his circumcision, and his umbilical stump. In the first months of his life he developed hematomas, spontaneous bleeds, and deep spontaneous bruising.
When he was just 5 months old, he was diagnosed with Hypofibrinogenemia, which is a Factor I deficiency. It’s very similar to Hemophilia, but more rare. It means that he has extremely thin blood (as thin as is medically possible to detect) and he is unable to clot. This condition can cause deadly internal bleeds, joint disfiguration, nerve damage, and crippling arthritis.
Can you imagine having to constantly worry about all of that on top of the normal motherly things?
But the Kellys are optimistic! They are hoping for a cure. Scientists believe the answer lies in gene therapy, by repair or replacement of the faulty gene. This could mean taking genes with the correct directions for making the needed factor and inserting them into the cells of a person with hemophilia.
Thankfully, Forrest has been able to have fantastic medical care and has a great support group.
I have been touched by Forrest’s story and have chosen to raise money through “A Chick w/ Sticks” to help fund research in order to find a cure, and to help other children that have also been diagnosed with this same bleeding disorder.
Josie Kelly (Forrest’s mother) has plans to start a Foundation and help create better awareness for those with bleeding disorders. I will make sure to share that information when it is forthcoming.
Until then, please join me here on my ACWS blog as I document my progress and experiences.
Thank you to everyone who has supported me in my efforts so far!