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A Gift is a Porch Lift!
$2,420 Raised
69% of $3.5k goal
11 contributors
0 days left
Ended Apr 24, 2013
Please give! We would love help in raising funds to purchase the $5900 porch lift needed to have outside access. If more money than that is raised (besides crying out of pure joy) the money will go towards ramps so I can have access to the backyard too!

My name is Jennifer Bolton. I’m married and am the mother of two sons. My sons (18 and 13 years old) are both on the autism spectrum, have ADHD, anxiety, and more. But that’s not why I’m writing you today.

Deteriorating health has lead my doctor to run tests and send us to specialists. It has been discovered that I suffer from a rare (rarely properly diagnosed), genetic disorder called Ehlers-Dan
los Syndrome (EDS). Since the disorder is genetic, there is a 50/50 chance my boys would have it too. It turns out both boys are within the 50% and also suffer from EDS.

Ehlers-Danlos Syndrome is a genetic collagen defect. The body is made of 80% collagen. The skin, veins, joints, and organs are affected by the defect. Our bodies are slowly become defective as the collagen breaks down.

With my sons and myself, our defective collagen causes two other conditions. Postural Orthostatic Tachycardia Syndrome (POTS) and dysautonomia. POTS is when your veins in your legs don’t constrict the blood when you stand up, which causes blood to pool in the legs. This causes dizzy spells, light-headedness, and sometimes fainting. Since the blood is pooling in the legs, the heart rate speeds up 30 beats or more upon standing, which causes tachycardia (overworking the heart). The autonomic system include breathing, blood pressure and heart rate, the parts of your body that work automatically. Dysautonomia is when the autonomic system is dysfunctional. My sons are in the beginning stages of these conditions. I am farther along and severely affected.

EDS is named after two doctors, Edvard Ehlers and Henri-Alexandre Danlos, who discovered some people have hypermobility that causes pain. Contortionists, some dancers and people who are double-jointed, have hypermobility. Other connective tissues disorders can also cause hypermobility. When these joints hyperextend (go beyond what they are suppose to), sublux or dislocate and cause pain, it may be Ehlers-Danlos Syndrome.

My sons and I have grown up in constant pain. For example: One day our fingers may hurt whereas the next day it may be hips. Our sacroiliac (SI) joints and hips have partial and full dislocations on a regular basis, as well as fingers, shoulders and other joints that are affected by the defective collagen. We wear braces and tension bandages to help hold our joints in place and use ice packs to deal with the pain. We only take over the counter medications as our bodies do not absorb narcotics properly.

As my body breaks down, I have great difficulty walking. I now need a wheelchair on outings and the majority of time in the house. When I can stand, I use a rollator. I can faint standing up, taking a shower, while cooking or doing everyday activities. The scoliosis makes the pelvic bone tilted, coupled with poor collagen in the joints, these combined issues wreak havoc on the body. When the SI Joints pop out of place it causes the hips to (dislocate), which affects the knees, ankles and feet. When these joints are all out of place, it makes them turn inward so that I appear as if I have MS because both leg joints are slowly popping with each step. It usually happens while I'm standing, although sometimes, it happens when rolling over in my sleep. When getting up to go to the bathroom at 2am, I usually have to pop all the joints in place before standing and end up crawling back to bed because they popped out again on the way back from the bathroom. A wheelchair has made this process much easier and less painful. It is also useful on days that that I feel like fainting. At some point in time, my boys will likely end up in the same predicament and also require wheelchairs of their own. They already use rollators on longer outings due to the POTS and dysautonomia.

I have a powerchair coming to me. The problem is, it will be outside. I cannot bring the powerchair in and out of the house. This is where YOU come in! I need financial support to purchase a lift for the house. This will allow all THREE of us to use a rollator, manual chair and/or powerchair to get in and out of the house. I’m nearly housebound with limited outings, which makes it extremely important to set up the house in a manner that helps all of us get around. It needs to be functional because that is where we spend the majority of our time. The boys are beginning to deteriorate quickly and at a much younger age, making me face the reality that they may end up in wheelchairs later in life. You would be giving all three of us, who plan on living in this wonderful community for the rest of our lives, a huge over-the- top blessing!
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