#Darwin End-of-Life Care, Adapt His Home

Sarah Revels is organizing this fundraiser.

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Fundraising to repair and adapt Darwin’s childhood home, so he is able to stay home, while receiving end-of-life care.

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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 neurons aka 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. He has always had perfect pitch and takes great pleasure in the familiar sounds of his puppy's paws, his teacher's voice, a friend's whisper and online music therapy, generously provided by the Sonatina Center of Dover, NH. 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 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 would like to give the gift of building supplies, mobility/adaptive supplies or contractor time, or if your organization has a grant you believe Darwin would qualify for, please do reach out to Sarah at Sarah at SarahRevelsCounseling dot com or six hundred and three, four hundred seventy, ninety two forty two.

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 :

Wheelchair van with hydraulic lift

W/C van repairs

2 Rounds of roof repairs

2 Sizes of Special Tomato chairs

High-Low, changing and PT table

Temporary, single, entrance/exit ramp from home

2019 Tax preparation (gift)

Outdoor, shaded, access to front yard

Hoyer Lift Scale

Adjustable recline activity chair

Cooling equipment for sleep, home and travel

Changing table

2 Sizes of Henziger Collars for neck support

Thickened drinks and softened foods

Wheelchair modifications

Service Dog (gift)

Songbirds (gift and fundraising) - ESA/Present-focus tool for memory loss and blindness

Porch railing repairs (gift of carpentry)

Chimney repairs (gift of roofing)

Stairlift (gift and fundraising)

Stairlift repairs

Temporary, intermittent, access to full shower and Supplies for thorough bed-baths (gifts and fundraising)

OT and PT supplies (gifts and fundraising)

Mold remediation

Porch repairs, to support Wheelchair Ramp

A Note about equipment: Often times, things "covered" by insurance, or the state take so long to obtain that a child grows through and uses several sizes of equipment out of pocket before the first "covered" item arrives.

Needs Remaining:

Accessible showering (requiring, converting half-bath to a full-ADA-bath, & relocating front door)*

Reframe laundry room door

Ceiling lifts to transfer between seats/activities*

Repair leaking window

Accessible sleeping area*

Storage for medical equipment

Swing mount, reinforced, in ceiling

Repair and modify parking to accommodate wheelchair van

Repair and level flooring, change carpet to solid floor, so equipment may roll safely*(partially covered)

Adaptive lighting

Economic, home temperature regulation

Remove large, old, natural gas furnace from Darwin's future bedroom space.

Remove stair lift once Darwin's room/bath are relocated.

Permanent ramps to access home and the community*

Professionally dis/re-assemble Safe Sleeper Bed to Darwin's new bedroom*

*Items with an asterisk are pending possible state-funding. Currently Darwin's application has been approved (hooray!) but individual projects are pending contractor bid AND now the clock is ticking...Darwin was informed the state funding will soon disappear, and a bathroom will no longer be covered if we do not accomplish it beforehand.

It has taken over two years to apply through the State of NH for the home modification program. In the meantime fundraising has been essential in supplying equipment and modifications to enable a growing boy to continue living at home. Once Darwin's state application processes, we will update the fundraising goals and likely the monetary goal, to reflect whatever costs remain. Also, to access state funding for modifications, we MUST use the existing footprint of the house, which means we must pay out of pocket for things we know we need to make that portion of the house ready for Darwin's bedroom. For example, replace and remove an old, but working, furnace which is taking up much of the floor-space, before the floors are redone. A modern, efficient cooling/heating system for Darwin's new bedroom will not only free up needed space, but will also make staying at home more financially sustainable.