Help Heather Get a Stairlift!

Hi! My name is Sami and last year I married the love of my life, Heather! When we met, we went on lots of nature walks and hiking dates and park excursions. I fell in love with her passion for life and her work, silliness that matched mine, and overwhelming kindness and optimism even when things began to get hard.

Heather is disabled due to a genetic connective tissue disorder. Recently, she has become a nearly full-time wheelchair user and struggles to get up and down the stairs without help. While she can usually manage with a cane, crutches, or by going up or down one step at a time while seated, it causes pain, dislocations, and takes a tremendous amount of energy. Recently, she has had episodes of partial to total paralysis of her legs - sometimes for hours to days on end and without warning. With return to office mandates, we can't always be at home at the same time. I'm fundraising so we can get a stairlift fitted in our house to help give Heather her independence back and increase her quality of life at home!

The Goal:

Help us get a stairlift in our house so Heather can get up and down the stairs on her own! We were quoted at a price of $12,500, which was lower than typical for the curved type of stairlift we need that will be safest for Heather, the best fit for our old beautiful house, and will last the longest time. We are fundraising for $10,000 so we can pay that amount. 100% of the funds donated will go to the stairlift.

More about Heather's condition:

Heather has a long history of chronic issues and pain that started to become unmanageable during her freshman year of college. She started having extreme sciatic nerve pain and muscle weakness that at times made her completely unable to walk. After seeing many different doctors and specialists, she went through several years of physical therapy that just made it worse. Even still, she continued to push through and be very physically active, and loved to participate in activities like dance, and running. She performed in shows doing stage combat, began doing HEMA classes, and even did CrossFit for a few years. In fact, the day I met her she had a killer stage fight at the Renaissance Faire!

Unfortunately, the pain continued to increase. Shortly after, she also began to experience hemifacial spasms, causing TMJ and exhausting facial pain. She also began to have debilitating episodes of stomach pain, and typically wouldn't be able to keep down at least one of her meals each day. After extensive visits to specialists over the course of several years, including a geneticist that she was on the waiting list for 2 years before she got in, and we drove down to Miami to see, she was finally diagnosed with several chronic conditions. Some of them include:

Classical-like Ehlers Danlos Syndrome: A rare connective tissue disorder that affects less than 1 in 1 million people, causing joint hypermobility and frequent dislocations.

Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (Hyper-POTS): Causes a rapid increase in heart rate and blood pressure upon standing that can result in hypertensive crisis and fainting.

Mast-Cell Activation Syndrome: A condition causing overactive mast cells resulting in frequent allergic reactions.

Gastroparesis: Paralysis of stomach muscles causing delayed digestion, along with nausea, vomiting, and pain.

Celiac Disease: An autoimmune disorder that prevents her from eating gluten.

Degenerative Disc Disease: A progressive deterioration of spinal discs.

Shortly after we moved into our dream home, Heather's health issues began to worsen and she was passing out often - sometimes multiple times a day. She tried to push through and remain active, but would often pass out by herself in the house and I wouldn't even find out until later. This is what prompted us to get Pancake, in hopes of training her to be a service dog. Unfortunately, the initial trainer we had picked for her ended up lying to us, and caused Pancake to come home knowing less than she knew when we dropped her off. We had to try 2 more trainers to help correct this. So then the plan was to self-train, but with both of us working full time, it seemed nearly impossible. This was taking a toll on her independence to do simple out of the house tasks for fear she'd have an episode while she was by herself. Thankfully, we had the perfect opportunity to meet Donut who has been the good-est most hard working girl as Heather's medical alert and response service dog. (We love our Pancake, but she is now just Baby™).

Current Challenges:

About 5 months ago, Heather was exploring options for a different type of power assist for her manual wheelchair as she was often dislocating her arms trying to self-propel and steer. After consulting with her doctor and mobility team, she was prescribed a power wheelchair.

While her new power chair comes with a super cool set of features, it also weighs over 400 lbs and can't be folded or pushed. In the two months she has had her powerchair, she hasn't been able to take it anywhere, and has instead been using a cheaper folding power wheelchair she got online in May. This chair helps, but it still weighs about 45 lbs and she has been dragging it down the front stairs, into the trunk, and to work on her own. Recently her brother and his friend built an amazing ramp on the side of the house, and I DIY powered her a path from the ramp to the driveway, but she still couldn't get the chair into either car. We tried a portable ramp that didn't work, we tried installing a hitch and getting a used wheelchair lift, only for the chair to not be able to secure to the lift. An accessible vehicle was really the only option, and after a few months of looking, she spent all of her savings and took out a loan to purchase an 11 year old van for the price of a BRAND NEW car that was converted with a ramp. Yesterday she took her chair somewhere (Publix) for the first time!!

Why do you need funding assistance?

Heather and I both work full-time, but it is just enough to pay bills and care for the house and dogs especially with payments we are already managing on credit cards and loans. We also have a roommate in order to help cut costs. Heather has drained her savings for the van, and I will be draining mine for the stairlift, which we originally planned to use to finally re-do the upstairs bathroom floor (if you've seen it, you know!)

To put it lightly, being disabled is very expensive. Here is some perspective of what Heather has spent in the last two years -

- Pancake: puppy + first faulty trainer + second trainer + self-training mentor before washed from service work. $9,250

- Donut: dog + additional task training. $8,000

- Mobility aids: initial wheelchair + forearm crutches + custom height cane + used push assist that needs a new battery + various braces/splints + folding power chair. $4,550.

- Monthly medication: for 2 years. $9,600

- Second car mods: Lift for back of car + hitch installment. $1,900- Wheelchair car ramp: $220- Physical therapy specialist: $1,690

- Used 2015 Accessible Vehicle: Down payment. $8,000 (+ $600 monthly payment on loan)

Total: $43,210

Why did you buy a house with stairs/why not just move?

Stairs were not an issue for Heather when we bought our house. She herself lived in a third floor apartment. It's the perfect house for us, and was affordable in a location that we love. Facing the idea of leaving it after all the love that we have put into it and plans we have is heartbreaking. This is the last puzzle piece to make the house accessible for Heather so we can call it home for 20+ more years, and keep it a safe place for friends and family to be welcomed.

Doesn't the lift company have financing or can't you use a credit card?

The company only offers yet another credit card, and we have just managed to organize our current credit card debt. Sitting at "good" credit we can't afford another card or loan.

What about a side hustle?

Heather has done freelance and an Etsy store in the past, but putting all these things together with a full time job and being disabled, it's not physically feasible.

What if you get more money than you need?

Bathroom floor, man. It's bad. There are many things that need to be done for our house, and the intention is to make it a really amazing space not just for us, but for friends and family to be warm, welcomed, safe, and spark joy all around.