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Fundraising so Darwin is able to stay home, while receiving end-of-life care. We've made it to our final modification goal: HVAC for Darwin.
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Darwin is terminally ill, from a sudden, aggressive, progressive disease known as Metachromatic Leukodystrophy (MLD). A rare condition which slowly dissolves the brain and central nervous system. Since diagnosed at 6 years old, Darwin has lost his ability to walk, speak, eat, regulate body temperature and generally control his own body. Now in the end-stage of MLD he last lost most of his eyesight and ability to create memories, such as learning new places or remembering new people. End-stage MLD is often confusing and scary for kids, especially changes in housing or caretakers.
Darwin remains resilient, ready to laugh and presents with a dignified comfort when engaged in familiar environments. Thankfully most children with MLD do not go deaf. We hold this same hope for Darwin.
The joy, love and adaptability Darwin shows, especially when spending time with family and friends, are the strengths MLD can not take from him. Darwin is the fourth generation to live in his Portsmouth home. His family, friends and school form the community that quite literally is his world. As he lives out his final days it's believed Darwin will be happiest when he can feel and hear he is home.
Sarah, Darwin's mother, has gone back to school and obtained a license through the NH Nursing Board to ensure caring for Darwin at home for the rest of his life is financially sustainable for the two of them.
With your help, no matter what else MLD takes from him, Darwin can stay in his home with those he is closest to, taking all the comfort and joy possible in the places and people he knows and loves. Our main goal is to keep Darwin out of an assisted-living facility. To do this he needs an accessible home and transportation.
To see what we have already accomplished through the state, grants, gifts and donations, as well as what we are still in need of, scroll down.
If you can’t give financially we understand and want you to know “shares” on social media, or wherever you socialize, make a big difference in keeping momentum going. Thank you for all you've made possible for Darwin so far.
#DarwinNH
With Much Love,
Darwin's Mother, Sarah
Accomplished Through Fundraising & Programs :
Wheelchair Van
Accessible First Floor, with Bedroom, Full Bathroom and Adaptive Lighting
Outdoor, shaded, access to front yard
Service Dog
Songbirds- ESA/Present-focus tool for memory loss and blindness
Various Medical Devices and Supplies (while waiting years for insurance to provide or when insurance did not cover an item)
Safe Parking for Wheelchair Van
Repairs and Renovations to enable ADA Home Modification
Wheelchair Van Repairs
Needs Remaining:
Heating and Cooling System for ADA Space
Swing mount, reinforced, in ceiling
Fix Various Holes left by Construction
Installation of a storm door.
Amazing progress through the State of NH for the home modification program! After almost four years we accomplished the ADA bath, two ramped entrances and a solid floor to create "Darwin's Apartment" aka first-floor, accessible living in his childhood home.
To access state funding for modifications, it was required Darwin use the existing footprint of the house, which means the family paid out of pocket for things we needed to make that portion of the house ready for Darwin's bedroom. There were also surprise costs as construction went on, which would have mitigated all renovations if not addressed by Darwin and his mom.
Now that basic constructions is complete, some costs remain, for example a cooling/heating system is needed for Darwin's bedroom, and his wheelchair van needs repairs. The family has utilized all their savings and prior fundraising to get this far, and so our current financial goal reflects Darwin's next, known needs.
Thank you to MWS Paving who not only did a great job on the driveway but fascinated Darwin with their equipment.
Big thank you to Pettigrew Plumbing and Heating for their work on Darwin's bathroom and for shoveling Darwin out in a snow storm!
The Lefebvre Family and LeFebvre Renovations LLC, went above and beyond making sure Darwin got through the state process and everything came together for him. We owe them an immeasurable thank you! www.lefebvrerenovations.com
Thanks to Friendly Pets and Petco for making Darwin's dream of song birds possible!
Darwin and his service dog, Binks, relaxing in their "new apartment!"
Darwin has so much fun hosting at home or going out to local spots like the cotton candy making machine at the mall.
Darwin is always happy to go to school and his friends love reading to him.
We take advantage of any "good days" for adventure! Thanks again to Make a Wish, for the Hippocampe, which makes so much possible.  
Small, shaded and screened area for Darwin to get fresh air, watch for butterflies and check on his pollinator garden.
Music is more fun with family!