Darling Quillen, almost 2, has been diagnosed with a rare genetic disorder. A family member was able to help us get her an appointment with Dr. Florian Eichler who is the Director for Rare Neurological Diseases at The Massachusetts General Hospital in Boston.
She is scheduled for an initial evaluation on May 22nd in Boston. (She lives in Florida.) After that, she will be asked to return at least 6 times in order to be considered for any clinical trials. Besides the medical costs, there will be flights, rental cars, and housing for each visit and longer stays for clinical trials. Right now, both parents try to attend important medical visits.
Nicole has had to leave her management position to care for Quillen fulltime. Jenn has a high-stress job with worldwide travel, putting an additional burden on the caregiver. As Nicole says, "Caring for a child with special needs is not for the faint of heart." Last week they had 3 Physical Therapy sessions, 2 Occupational Therapy sessions, 2 speech/food sessions, saw a dietician, met with a nurse from Hope Kid Care, saw a regular therapist, and restructured the stroller to make it more secure. Quillen was weaned from one medication and had a probe threaded through her nose and into her esophagus for a 24 hr. PH study.
Next week they will do all that again, except she’ll have an aspiration and swallow study. The following weeks include both a barium study and a gastric emptying scan!
Jenn says, "Our little one is such a trooper! She didn’t cry once when they put the probe in. She gagged and her eyes watered, but she was most worried about losing her pacifier."
The family is facing other unexpected expenses including legal fees to prepare documents and urgently needed medical equipment for her to be safe in the bath or high chair because she has minimal muscle tone.
When Jenn is away, Nicole sometimes needs respite care because taking care of Quillen can be exhausting both physically and emotionally.
Quillen’s friends and family are committed to helping out, but most live far away. Any support will be deeply appreciated and could go a long way as Quillen makes progress on her own timetable.
Thanks for your loving support.
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