From the day he was born, Daniel grew and developed like any normal baby boy. That is until he was about 11 months old, when we began to suspect that something wasn’t quite right—he began loosing muscular strength and missed several of his developmental milestones. Then, at his 12 month check-up our doctors confirmed something was wrong. On February 16, after several rounds of testing our sweet baby boy was diagnosed with Krabbe Syndrome. A rare genetic disease that affects the central nervous system.
Much to our dismay, there is no cure for this rare and terminal disease. A terminal disease where chances of our baby making his 2nd or 3rd birthday are slim. To put it lightly, we are beyond devastated. This reality of ours is hard to swallow and is every parents worst nightmare.
While there is very little known about Krabbe Syndrome, we are looking to learn everything there is to know about this rare disease in order to give Daniel the best and most comfortable life possible as his symptoms advance. During our research we were referred to the Children's Hospital of Pittsburgh of UPMC in Pennsylvania (www.chp.edu/our-services/rare-disease-therapy/conditions-we-treat/krabbe-disease ) which is the only hospital in the nation that has been studying this rare disease. They also offered us to travel to them to learn more about our baby boy's condition and to see if he is a possible candidate for an umbilical cord stem cell transplant. A transplant that will not necessarily cure our baby’s disease, but that may help delay his deteriorating symptoms. As of now, we are unsure if we will perform this treatment and are waiting for Kaiser (our insurance) to approve Daniel's transfer to this hospital.
We are not a wealthy family, but are fortunate to have food and a roof over our heads. There is also a probability that the Children's Hospital of Pittsburgh may grant us some financial assistance. However, we are not prepared for any unexpected expenses during our travels, or any additional medical expenses that our insurance may not cover. With all that being said, we are asking for any help—with your prayer or with any donation possible. Any unused monies will be donated to the Children's Hospital of Pittsburgh.
Thank you so much for taking the time to read this, for your thoughts and your generosity. ￼￼
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