My dear family and friends,
I have started a GoFundMe page for my neice and great- nephew Amber & Michael Miliote. Michael was born with Phenylketonuria (PKU) at birth which is a rare inherited metabolic disorder. Michael represents .001 of the population. Michael’s body lacks the ability to break down Phenylalanine from the foods. If left untreated, Michael would have brain damage, experience developmental delay and his muscles would not grow properly. The treatment for PKU is medical formula and an extremely protein-restrictive diet for life. In addition to having PKU, Michael has not learned to chew and has no motivation or desire to bite and chew food. Currently, Michael eats approximately seven foods that have to be chopped into tiny pieces and spoon fed to him. This makes it very challenging to meet Michael’s dietary needs. Since managing Michael’s diet is the treatment for PKU, they are seeking intensive feeding therapy at the Children’s Hospital of Philadelphia. Michael has been accepted to their 6 week program which will help Michael learn to eat like his age appropriate peers. Michael receives therapy four times per week and his medical team believes this is the course of treatment. Unfortunately Amber and little Michael have to leave their home in South Carolina (and Amber's husband Michael and other son Marshall) for the 6 week program. This is very costly on top of paying for the program. Amber was ready to drive 2-3 hours each way to stay with a relative in New Jersey. I feel this would be to tiring for both Amber and little Michael after going through an eight hour therapy day. I am asking for donations to help pay for a hotel/apartment very near to the Children's Hospital for them to stay in, to make this a little less stressful than it already is going to be. Any amount you feel you can give will be greatly appreciated by me and my neice and nephew.
I have started a GoFundMe page for my neice and great- nephew Amber & Michael Miliote. Michael was born with Phenylketonuria (PKU) at birth which is a rare inherited metabolic disorder. Michael represents .001 of the population. Michael’s body lacks the ability to break down Phenylalanine from the foods. If left untreated, Michael would have brain damage, experience developmental delay and his muscles would not grow properly. The treatment for PKU is medical formula and an extremely protein-restrictive diet for life. In addition to having PKU, Michael has not learned to chew and has no motivation or desire to bite and chew food. Currently, Michael eats approximately seven foods that have to be chopped into tiny pieces and spoon fed to him. This makes it very challenging to meet Michael’s dietary needs. Since managing Michael’s diet is the treatment for PKU, they are seeking intensive feeding therapy at the Children’s Hospital of Philadelphia. Michael has been accepted to their 6 week program which will help Michael learn to eat like his age appropriate peers. Michael receives therapy four times per week and his medical team believes this is the course of treatment. Unfortunately Amber and little Michael have to leave their home in South Carolina (and Amber's husband Michael and other son Marshall) for the 6 week program. This is very costly on top of paying for the program. Amber was ready to drive 2-3 hours each way to stay with a relative in New Jersey. I feel this would be to tiring for both Amber and little Michael after going through an eight hour therapy day. I am asking for donations to help pay for a hotel/apartment very near to the Children's Hospital for them to stay in, to make this a little less stressful than it already is going to be. Any amount you feel you can give will be greatly appreciated by me and my neice and nephew.
Organizer and beneficiary
Michael Miliote
Beneficiary