The Reagan Fund

Reagan was born in February of 2013, and on day four of her life Rob and Anne-Marie learned that her newborn screening results were abnormal. Reagan was diagnosed with a rare genetic disorder called Glutaric Acidemia Type 1 (GA-1 for short). Due to the diagnosis, Reagan is required to have a strict diet to limit her lysine intake (an essential amino acid found in most foods) and has a very specific "sick-day" protocol if she gets even the slightest cold. She is monitored and followed very closely by a genetics team at Nemours.

For 13 months, Reagan never got sick, never had a cold, no sniffles, nothing. On March 30, 2014, she was admitted to the hospital for RSV (click here for details). After eight days in the hospital Reagan was discharged, but was readmitted within two days for something much worse.

On April 8, 2014, while playing with her mom, dad, and grandmother (Mimi for short), Reagan collapsed on the floor. She was unresponsive and rushed to the hospital in an ambulance. We found out later that she suffered a metabolic crisis which resulted in permanent brain damage, primarily isolated to her basal ganglia. It is believed that her collapse was a result of that entire area being damaged, and that her genetic disorder, GA-1 was the culprit (GA-1 is known to attack this particular part of the brain during a metabolic crisis). Even though Rob & Anne-Marie followed the strict diet and sick-day protocol for Reagan, there was no indication that she was ever in danger of this happening.

As a result of her basal ganglia being damaged to such great extent, Reagan also had three seizures in the hospital that did additional damage to some areas in the frontal cortex of her brain. The neurological damage has caused her to lose muscle tone and the abilities to sit unassisted, stand, walk, and eat. She now has a G-tube to ensure she continues to get the strict amounts of formula and nutrients.

Because of these setbacks and new health issues, Reagan will require six to seven therapy treatments per week, including physical, occupational, feeding and speech. Insurance will cover 30 TOTAL treatments across the board, which will be exceeded in just over a month. If insurance does not approve the cost for additional therapies (which is an annual approval process), the out-of-pocket expense will be $500 per week — a total of $26,000 for an entire year of therapy (this includes a 75% discount for paying in full on the day services are rendered). This number only includes therapy treatment and does not include any uncovered medications or medical equipment. The list of recommended treatments and therapies continues to rise, as do the costs.

Reagan's condition is very rare and so are her medications. For one of her prescriptions, the pharmacy requires her doctor to personally authorize each refill. On top of that, the insurance company has a right to deny coverage of this medication at any time. The cost of each refill of this particular drug is $540.

This is how the campaign goal of $75,000 was determined:

• Out-of-pocket therapy expenses for one year: $26,000
• Medications that may be denied coverage by insurance: $6,480 per year
• Prescription formula: $4,800 per year
• Recommended medical equipment: $3,000-$5,000 per year
• Total known costs for one year: $42,280
• Additional funds for unknown/as-needed expenses and ongoing care: $32,720

Reagan's health situation is still precarious — it's possible for her to have another metabolic crisis and sustain even more damage. These are conservative cost estimates, but it's impossible to know what additional and unknown expenses may be incurred, and Reagan will need this care for more than just one year.

This is where you come in. Rob and Anne-Marie don't typically ask for help, but in this circumstance we all are relying on God to move the hearts of our friends, family, and even strangers so that Reagan has every opportunity to thrive and exceed the doctors' expectations. We want her to have the best medical care possible so she and her parents can have a happy, full, abundant life. Please help us accomplish that (seemingly far-off) dream.

Sincerely,

Trey & Rachel