Save Our Sonny

Sonny is a two year old boy living in Massachusetts fighting a rare genetic disease called IPEX.  Most children do not survive past two and this little fighter is beating the odds.  Sonny will be three in September and will spend his birthday in Seattle, WA where the experts on his disease will begin testing and perform labs to start the long process of getting Sonny the help he needs to beat this disease!  At the end of September the family needs to fly to Seattle to meet with the new team and begin a medical treatment plan.  Between travel expenses, lost wages, medical expenses, and the costs associated with their final move cross country late fall the family needs all the help they can get!!

After a failed engraftment from the bone marrow transplant he received at Children's Hospital Boston Sonny now suffers transplant complications in addition to the health issues associated with IPEX.  Sonny receives weekly antibody transfusions to help his weakened immune system fight viruses and bacteria that he could not otherwise fight.  He has also been on long-term medication to attempt to keep his symptoms at bay but his little body cannot be on them for long before the medications themselves start to cause growth, skeletal, and organ damage.

Sonny's best shot at a healthy and happy life is to relocate with his family to Seattle, Washington where the experts who discovered this rare disease can properly care for him.  Seattle Children's Hospital can offer him safer medications as well as a safer transplant regimen.  Let's pull together and help this family raise the funds they will need to move cross country, get their son the care he desperately needs, and give them hope for a healthier and happier life together.          

                               HELP SAVE OUR SONNY!

If you would like to follow Sonny's journey please visit https://www.facebook.com/PrayersForSonny

                              WHAT IS IPEX SYNDROME?

 Immune dysfunction, polyendocrinopathy, enteropathy, X-linked (IPEX) syndrome is a lethal syndrome first described as a unique entity by Powell et al in 1982.[1] It most commonly manifests with early onset, insulin-dependent diabetes mellitus; severe watery diarrhea, often with accompanying failure to thrive; and dermatitis. Other clinical features are more variable in their expression.[1, 2, 3] 
Most affected children die within the first 2 years of life. IPEX syndrome is an X-linked recessive disorder with exclusive expression in males. The identification of mutations in the forkhead box protein 3 (FOXP3) gene associated with IPEX syndrome and a murine model has generated a considerable amount of interest and research.[2, 3] This has also extended into the therapeutic spectrum, with new immunosuppressive regimens and use of hematopoietic stem cell transplantation (HSCT).