'Perfect Little Girl' From Mt Prospect Battles Rare Disorder: GoFundMe
MOUNT PROSPECT, IL — Like any toddler in Chicagoland, Phoebe enjoys going to parades, fireworks, trips to the zoo, going to the beaches of Lake Michigan. Unlike local kids, she was diagnosed with metachromatic leukodystrophy, or MLD, in May. With no cure to the rare and terminal genetic disorder, Phoebe’s life expectancy is less than 18 months.
To that end, her mother, Mara Best-Abuirmeileh, of Mount Prospect, has organized a GoFundMe campaign intended to cover the costs of medical care, special needs items, and quality of life supports, including therapy, equipment, and end-of-life planning.
As of Wednesday afternoon, the GoFundMe has raised more than $60,000 of a $40,000 goal.
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“We are heartbroken and devastated over this diagnosis for our perfect little girl,” Best-Abuirmeileh said. “Things are progressing quickly for Phoebe, so we’re trying to make the most of the time we have remaining with her.”
Best-Abuirmeileh said Phoebe was hitting all the developmental milestone as scheduled, but things slowed down when it came to walking.
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“Phoebe was cruising and pulling herself up to stand, but wasn’t willing to stand or walk on her own just yet,” Best-Abuirmeileh said.
At Phoebe’s 15-month appointment, her pediatrician suggested going to a physical therapist, which the family did, but they weren’t noticing any progress over a few months.
“Phoebe stopped showing interest in things she used to love,” Best-Abuirmeileh said. “She stopped walking with her walker, playing with her favorite toys, turning the pages of books as we read and crawling up the stairs.”
Things really started going downhill in April when Phoebe could no longer feed herself or hold a bottle up with her hands, even struggling to sit on her own. She would scream during car rides and cry when bathing. Best-Abuirmeileh called it a “scary and confusing” time.
After seeing a neurologist in May, some tests were done that came back with positive results and Best-Abuirmeileh and her husband, Adam Best, thought everything would get better.
“That ended when Adam and I learned that we were both carriers of a rare genetic disorder that we passed down to our daughter,” Best-Abuirmeileh said. “Phoebe had a 1 in 4 chance of being diagnosed with MLD with both of us being carriers. Life can be cruel.”
Last week, the family visited a hospital over concerns of Phoebe not receiving enough nutrition due to her struggles with eating as her MLD progresses. Best-Abuirmeileh said they met with a team of doctors, including her neurologist, surgeons, dietitians and therapists, and concluded the best route for Phoebe was to get a nasogastric (NG) tube immediately to build up her strength. In a few weeks, Phoebe will have surgery to have a gastronomy tube inserted.
“We’ve quickly learned that caring for a sick kid gets expensive — and fast,” Best-Abuirmeileh said. “In addition to doctor appointments and tests, special needs items are more expensive than you could ever imagine and oftentimes insurance does not cover the cost or the time burden to get them covered is too much as Phoebe’s needs are changing on a nearly weekly basis.”
To learn more about the GoFundMe and make a donation, visit here.
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