EVENT DATE: Nov 06, 2011
Diane Sassone wrote -
To raise $$$$ for PKU research...Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.
Phenylketonuria (PKU) is inherited, which means it is passed down through families. Both parents must pass on the defective gene in order for a baby to have the condition. This is called an autosomal recessive trait.
Babies with PKU are missing an enzyme called phenylalanine hydroxylase, which is needed to break down an essential amino acid called phenylalanine. The substance is found in foods that contain protein.
Without the enzyme, levels of phenylalanine and two closely-related substances build up in the body. These substances are harmful to the central nervous system and cause brain damage.
Phenylalanine plays a role in the body's production of melanin, the pigment responsible for skin and hair color. Therefore, infants with the condition often have lighter skin, hair, and eyes than brothers or sisters without the disease.
Other symptoms may include:
- Delayed mental and social skills
- Head size significantly below normal
- Jerking movements of the arms or legs
- Mental retardation
- Skin rashes
- Unusual positioning of hands
Jordan started taking a new medication that allowed him to take in more protein. Unfortunately, the result for him was a false positive on the effectiveness. Today, he is only allowed to take in 200mg of phenylalinine (4grams of protein) a day. PKU kids cannot eat meat, chicken, fish, milk, eggs, beans, pasta or bread. A daily diet of salad, vegetables and medical food is normal. He drinks a special "milk" made up of vitamins and minerals and synthetic protein. Aspartame is practically poison to PKU kids. It is found in diet soda, gum and many medications. A very tough diet for a little guy to endure.
Please help us raise funds for research. Jordan just wants to be like other kids. Pizza Pizza Pizza!!!