Supporting Immigrant Family with Rare Metabolic Diagnosis (PKU)

For whom are we raising funds? 

Genetic counselors across two organizations are raising funds for a toddler with

Phenylketonuria (PKU) and his family who are experiencing forced deportation and separation by ICE.

Family story: 

The toddler's mother was detained by ICE last fall and had no contact with her family for 5 months. This spring, the mother was deported. Despite the child being a U.S. citizen, he is now living with his mother internationally. Unfortunately, medical monitoring and support for the child’s PKU is not available where he is currently living. 

Father is paying expenses for himself in the U.S. along with his wife and child internationally. The father is working overtime to make ends meet, pay for legal fees, and support his child's medical needs. Due to this disruption and the high cost of medical care, Father also needs financial support for utilities. More details are listed below.

How the donations will be used: 

Expenses were calculated to support this family for three months. 

- The child is supposed to have labs every 3 months for this condition, but has not had this routine care for 9 months. Donations will cover the cost of shipping necessary lab work to the U.S. where it can be processed.

- The specialized PKU formula is being delivered for free to the father’s address, donations will allow the father to ship the formula internationally. 

- Donations will also support the father with paying electricity bills, legal fees, and transportation.

What is PKU? 

PKU (Phenylketonuria) is a rare inherited metabolic disorder. People with PKU lack the enzyme required to break down phenylalanine, an amino acid found in almost all proteins. If untreated, toxic buildups in the blood and brain cause severe intellectual and developmental disabilities. Severe symptoms can be completely prevented through a strict, low-protein diet and specialized medical formulas. Regular lifelong monitoring of blood phenylalanine (Phe) concentrations to maintain safe Phe levels is recommended, with more frequent management in the first two years of life to adjust for growth and protein intake. 

For any questions or concerns, please reach out to undocugc@gmail.com and ragegenetics1@gmail.com. 

Funds will be raised over for the duration of a month or until goal is met. Updates will be posted every week on Monday.