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She put herself through nursing school and has worked hard to be independent since leaving home at 18. Like many people, she fell in love, got married and has a beautiful three-year-old daughter, Aislinn.
While attempting to get pregnant with her daughter she was diagnosed with Ehlers-Danlos Syndrome, a label that provided so many answers, but many more questions for the physical challenges she has faced since childhood. By thirty years old, she had already had six knee surgeries. Since having Aislinn, she has had another knee surgery and three ankle surgeries. The ankle surgeries unfortunately have met with multiple complications and her mobility is greatly reduced. She has been dependent on a wheelchair off and on since her pregnancy but now is completely dependent on a wheelchair. She is not able to transport herself to doctor or physical therapy appointments or anything else that requires leaving the house. Currently, her employer is accommodating her by allowing her to work from home, for which we are all very grateful.
The goal is to obtain transportation she can operate to recover her independence and take care of herself and her family once again. Unfortunately, wheelchair accessible vehicles are much more expensive than a conventional vehicle and we’re requesting your assistance in association with Help Hope Live to obtain the financial resources to make at least a down payment on a vehicle.
Sincerely,
Eilieen and Corbett Combest
Family and friends of Kassandra Combest are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Kassandra has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
I'm able to walk. The bone still hasn't healed and I can't walk fast or far... But I'm up she moving. I doubt that I'll never be able to walk very far and so we're still fundraising to try and get a wheelchair accessible vehicle
Had my driving evaluation yesterday! Hand controls are pretty cool...still have to do some drivers training before I'm certified to get out on the road but we're on the right track! Woohoo!
I don't even know what to say or what I should say. I'm officially on a written and I've been told I have sixty days to find a way to get back into the office. Although, I was told I'll still be allowed to work from home 3 days a week and only have to be in the office 2 days a week as a courtesy for my disability (normally when on corrective action you're in the office 5 days a week). I just don't know what the heck to do anymore.
I'm still fundraising and trying as hard as I can to find a solution to keep my job...Anything is appreciated! Please continue sharing!
I had a follow up with my ortho yesterday.... saw a LITTLE bit of healing in my ankle! YAY! That's so exciting! I was so disheartened at the last appointment. I'm still in pain all the time and I can't feel half my foot... they are scheduling me for an EMG Nerve conduction test to see what's going on with the nerve and how much damage there is... but at least there is forward progress!!
It honestly doesn't matter if my ankle heals or not, I'll always need a wheelchair to go any distance at all. 7 knee surgeries, 3 ankle surgeries (and my left ankle isn't is great shape but there is NO WAY, I'll ever have surgery on it now!) walking more than just around the house is likely to be out of reach. I'm still fundraising and still working to save up for a wheelchair accessible vehicle. I'm still going for a driving assessment next week to see about getting hand controls because a little progress isn't a promise of being able to drive anytime soon.
Any and all help is appreciated. Every share helps. Thank you ALL so much for continuing to be so incredibly supportive! <3
YAY! I got approved by Vocational Rehabilitation for the driving assessment! One step closer! I'm still the one that has to pay for the vehicle with all the adaptations..but it's still a step in the right direction!
Still fundraising and contacting every organization I can think of or that other people have suggested. Working with the social worker at my insurance company... Doing fundraisers through Usborne Books and More selling Cards for a Cause through Facebook. Linked this fundraiser to one on Facebook. Still working from home everyday, HR is asking me when I will be able to come back in the office... They need an end date for my ADA accommodations... Which isn't terrifying or anything. I don't know what we'd do if I lost my job.
Taking everything one day at a time and trying to stay positive. I know everything is going to work out. It has to.
Had a meeting with Vocational Rehabilitation...I'll admit I got my hopes up a little bit... thinking maybe I had found some help. I have... maybe. I don't qualify for assistance with any modifications. That's all on me, but they MIGHT/PROBABLY be willing to send me for the driving assessment and training. I'll take it! Every little bit helps!
Thank you all so much for your donations and for continuing to share! I appreciate you so much!
Another doctor appointment today with Ortho for my right ankle. I've been using a bone stimulator faithfully, 6 weeks since my last appointment. No progress. No signs of healing. Crushing disappointment. I will likely never be able to walk any distance to speak of but I had truly hoped to at least drive again... Soon-ish
So the quest continues. Need a wheelchair accessible vehicle. Need an assessment with vocational rehab and with driving rehabilitation/disability instructor for hand controls and special licensing.
Patience this is just another lesson in patience. I'm so thankful to all of you for your continued support... Financial, emotional and in sharing. Thank you.
Forward motion! Thank you all for sharing and continuing to share! I've now found people and resources. I am learning how to go about getting the evaluations needed to obtain transportation! So many steps and many many pieces of red tape to go. Plus the cost of everything, but possibly I can get some help from the state with hand controls and the driving assessment. So many phone calls to go before I truly now how this works but I feel like I'm learning more every day. Thank you!
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Hey, from one EDS zebra to another, hang in there! Your fighting spirit shines through. I\'m not able to give much but know that my heart and strength are with you. Your updates about finding and utilizing the services available...amazing. That\'s the very definition tenacity. Check your area for EDS support groups. There\'s more of us than we realize. It\'s not always a helpful thing to know, but doctors are learning new things about EDS all the time. Great for our kids, frustrating for us, right?
It sounds like you\'ve got a lot of support from your family and friends. May you cherish the smooth days and stick together over the bumps.
-Love and strength from one zebra to another
Miranda
Prayers that you reach your goal!
Heather Jaunakais
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Kassandra Lei Combest
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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