This is Billy Hughes and he will be 2 years old on September 7th. Friends and family would like to make it a little easier on the family by collecting funds to off set the costs of his medical treatment.
We are currently planning a fundraiser on Billy's behalf on Saturday, September 6th, the day before Billy's 2nd Birthday, and I hope that you all will put it on your calander to save the date. Currently the family is in Panama, where Billy is receiving stem cell treatment.
I had the pleasure of caring for Billy and his family during their stay at Moses Taylor NICU and it is my honor to try to offer my help to this most deserving family and I hope that you will feel that same way.
Billy was born on September 7th, 2012, at Wilkes-Barre General Hospital, by emergency caesarean section because there was a blood clot in his umbilical cord which was cutting off the flow of blood and oxygen to him and his vital organs. Following birth, Billy stopped breathing several times and was found to be having seizures. He was then transferred to Moses Taylor Hospital to receive treatment in their Level 3 Neonatal Intensive Care Unit. In the NICU, he was started on several medications for seizures and ultrasounds of the brain were carried out where his brain was found to be very swollen. He was released from the NICU and within 8 weeks the seizure medications were weaned due to severe side effects. Another ultrasound was completed at 6 weeks of age and Billy was found to have leukomalacia (several pockets of missing brain matter and cysts). At approximately 5months of age, an MRI of the brain was issued and Billy was found to have severe static encephalopathy coupled with a thin brain stem. Billy only has 20% of his brain left. At 6-8 months, Billy was having some jerky movements coupled with nystagmus (involuntary eye movements). These grew more frequent as time went on. At approximately 8 months, Dr.'s diagnosed these movements as Infantile Spasms (IS) and prednisone (a steroid) was started. At the same time, Billy had started to lose weight and developing issues with swallowing so a G-Tube was placed, which he currently receives all of his feedings through.
Billy has continued on many medication treatments with little improvement in his condition. The infantile spasms that he currently endures damage his brain more and more with every passing day. Billy is currently receiving home health visits every night, for 8 hours, and 15 hours a week during the day. He goes to physical therapy 3 days out of the week and has home visits to help him not fall further behind in his development. His parents take him to the Children’s Hospital of Philadelphia twice a month, where all of his doctors are located. The trip to Panama for stem cell treatment is Billy's only hope to regain some of his brain function. We are all praying for Billy and his family and hope for a successful treatment.
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