
10yo Dylan Complications after Brain Surgery
Donation protected
A little about Dylan...
Dylan Mott is an adorable 10-year-old who has been diagnosed with an extremely rare genetic disorder (IQSEC2), Epilepsy, Cerebral Palsy, and Hypotonia. He also suffers from a severe cortical visual impairment leaving him legally blind and is completely non-verbal, making it nearly impossible for him to convey how he's feeling.
Dylan's biological mother suffered from a high fever which resulted in permanent brain damage, due to contracting Meningitis as a child. Unable to care for a child, especially one with such severe disabilities, Dylan was entrusted to the care of his maternal grandmother, Heather Fenwick.
Dylan and his Mimi at Boston's Children's Hospital
Current Situation
Dylan was admitted to Boston's Children's Hospital on January 16, 2024; where his Neurological team performed a Corpus Callosotomy. The purpose of the procedure is to diminish the frequency and intensity of one type of seizure he suffers from. They have exhausted all the medications used to address the seizures that have gotten progressively worse. He has also developed other types of seizures as well, which may not see any improvement by the surgery.
Because Dylan is non-verbal, he was unable to clearly express his pain level after his surgery. What should have been a 4-6 week recovery period developed into more than 9 weeks before he was able to be transferred to a rehab facility. During his time at BCH Dylan was subjected to a plethora of testing, including a CT Scan and Spinal tap. Due to these tests, multiple lesions on his spine were found to be the cause of his extreme pain.
Warning: The following video may be triggering to some people. It was taken by me on a visit to Boston's Children's Hospital before the lesions were found.
Warning: May be difficult to watch
Recent Developments:
Last Wednesday, March 20th, Dylan was transferred to St. Franciscan Children's Rehabilitation Hospital. Although he is in much less pain now, he faces a long road to recovery. He is expected to be in the rehab center for a minimum of 1-2 more months.
Since January 16th, his Grandmother, Heather, has had to stay with him at the hospitals in Boston, where she naps in a chair for a few hours at a time. Her only other option is to climb into Dylan's twin-size hospital bed with him. Heather spends 24 hours a day with Dylan attending to his basic needs and relaying pertinent info to his treatment team. Eating 3 meals per day is extremely difficult, forcing her to dip into her fixed income normally allotted to paying her bills at home. Luckily, since moving to St. Franciscan's, their rooming situation has improved slightly with access to a small fridge, a microwave, and communal shower facilities.
Other ways to help the family:
Heather's family and friends have put together a sort of "Food Relay", where they take turns making meals and delivering them to the hospital. However, after doing this for several months, it would be great to have others, who may not have the financial means to donate but wish to help by making meals or delivering food to Heather in Boston. If this describes your current situation, we appreciate any help you can give. Please contact Jean or Jenny at Main Street Gift & Cafe located in Leominster. Alternatively, you can reach us through the GFM platform's contact email.
If you can donate financially, any amount will help the family afford to pay their monthly household bills without denying this incredibly selfless Grandmother food and hygienic necessities while she stays by Dylan's side. Additional money collected from this fundraiser will be allocated to anticipated future hospital bills during their stay. Thank you for your kindness & willingness to help Dylan's grandmother during this difficult time.
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Fundraising team (3)

Serafina Baronowski
Organizer
Fitchburg, MA
Heather Fenwick
Beneficiary
Jennifer Godin
Team member