13 Are You Missing Out On Resources That Can Help Your Family?

<p><strong>Guest:</strong> Christina Broderick</p> <p><strong>Christina’s Story:</strong> Christina Broderick is a mother of 2 special needs children with Autism. Her oldest son has a rare disorder called Phenylketonuria (PKU). Phenylketonuria is a rare disorder where individuals cannot break down the amino acid that make up proteins in our food. As a result, the amino acid Phenylalanine builds up in their blood or brain and can lead to brain damage if accommodations aren’t made.</p> <p>Her son was the first PKU diagnosis in over 30 years in her town of Lake Havasu City, Arizona. As a result, resources were limited. In 2010, Christina as a 19-year-old mother struggled to find a formula that was safe to feed her son. The formula she eventually found was very expensive! Christina also didn’t have a PKU specialist in her town, so she had to travel frequently typically 3.5-hour drives to Phoenix, AZ to see a specialist and get resources suitable for her son to include testing kits. For awhile all her son could eat was Rice Cereal.</p> <p>Christina was contacted by a representative of NORD (National Organization or Rare Disorders). NORD is a nonprofit 501(c)(3) provides assistance programs to help patients obtain lifesaving or life sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists. NORD helped Christina with resources a variety of resources to include food, gas reimbursement, medications, and funding. NORD also introduced her the company CAMBROOKE, which provides nutrition for those with serious medical disorders like PKU.</p> <p>When Christina’s son turned 6. NORD also introduced Christina to a new medication from Biomarin that was initially introduced for diabetic persons. The manufactures believed that this drug would be effective for individuals with PKU and began a study which included Christina’s son. Th