Family and friends of Alanna Flax-Clark are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Starting early 2021, Alanna could feel her body declining and getting weaker. Finally, in August, Alanna was hospitalized unable to breathe. There, they did MRIs followed by a spinal tap which showed white matter changes in the brain and spinal cord, and an inflammatory/demyelinating process which is affecting her entire body. Alanna has been hospitalized two times since for various treatments with little change in her condition.
January 9, 2022
Happy New Year to All! Thank you again for all your donations! I’m amazed to see the community come together to help me reach my goal. I have not used any of the funds yet. At this point I cannot drive anymore. Due to the extreme weakness and lack of mobility I am unable to get myself and my wheelchair in and out of my car anymore and I’m dependent on others to help me do so. I’m also dependent on others to help me push my wheelchair about 90-95% of the time, or more, depending on where I am. These are huge hurdles to my independence. I was able to try a couple of motorized attachments for my wheelchair that allowed me to use my current wheelchair completely independently. However, the way I was planning on converting my car would require me to remove the motor on my wheelchair each time I needed to get in and out of my car. I am too weak at this point to take the attachment on and off my chair each time. So I might have to reconsider and look at different ways at modifying my car. I don’t want to jump into anything at this point because these are costly modifications that can’t be redone easily. These modifications are also not covered by insurance at all. I want to make sure I have the best system in place so I can function out in the community independently.
In the meantime, the last month has been filled with lots of ups and downs. At the beginning of December I was able to get to the barn to drive a few times which was a blast! We were trying to figure out something I could do that involved the horses but didn’t require so much of my strength and balance, and this has been a happy medium. However, Though I haven’t been able to go back for a bit now, I’m looking forward to getting out there soon!
Before Christmas I randomly started experiencing side effects from my blood thinners and as a result am now anemic. I’m waiting on iron infusions, but because of the holidays things have not been moving forward as quickly as we were hoping with the infusions. I’m crossing my fingers that I’ll get a call to schedule this week because I’m feeling pretty crummy!
This past week I was able to meet virtually with a new neurologist from Columbia. I was lucky to receive a cancellation— most places were not seeing new patients or appointments were 6+ months out! I was very impressed with the doctor. Her questions were thoughtful and unlike others I’ve met with before. She actually wanted to admit me to the hospital, but because of Covid restrictions was unable to do so. She is concerned with everything she’s seeing in my records and even though they are only seeing patients virtually, is making an exception and wants to see me ASAP in her office. She shared some thoughts about various things with me, but most importantly I felt like she was engaged, proactive, and wanting to help.
It’s going to be a cold week here in NJ- stay warm if you’re in this area. If not, send your warm weather this way!
December 5, 2021
Thank you all for your donations and shares over the last week. Your support has blown me away! It has been a tough week physically, but seeing the community come together for me like this means the world to me.
Some of you know that I’m usually very independent and strong. I usually am able to transfer from my wheelchair to the car independently and then just lift my chair in and out on my own. Unfortunately, since this all started I’ve lost so much strength that I’m unable to do so anymore. I will need to have my car modified in a way so I’m no longer physically doing this. Even though this is a type of “medical equipment” that leads to more independent functioning, insurance does not cover these adaptations (along with many other things–including many medications!). Since insurance does not cover these modifications, they are extremely expensive. Much of the funds in this account will go towards covering the modifications for my car so I will be able to transfer and drive again without assistance.
Again, thank you all for your support!
Photo Galleries (4)
January 3, 2022
Wishing you the very best !
December 15, 2021
December 6, 2021
Please help Alana get some independence back ! Alana is courageous and a fighter, worst in loosing independence is also isolation. Alana we re with you !!
December 4, 2021
Dear Alana, My daughter, Danielle, went to Chaminade with you. She let me know what you were going through. I’m sending love and prayers to you and your family. Wishing you all of the best. Linda Kayne-Robb