Help Chelsea Thrive with Independence and Accessibility

I don’t know where to begin this request. I don’t know where to start, because the real beginning was so long ago, it is extensive, and her story complicated. I will try to explain Chelsea’s condition as plainly as possible with simple terms. Please bear with me, as it is easier to hold things in than to put into black and white on a computer screen those things you would rather not be reality.

Our daughter, Chelsea has been suffering from disorders and diseases her whole life. After well over a decade of misdiagnoses and unknowns, Chelsea was fortunate to be referred to the Ehlers-Danlos Syndrome (EDS) Clinic at Mayo Clinic in Jacksonville by a wonderful physician, Dr. Scott Kowalski. There at the EDS Clinic Chelsea was evaluated and deemed a candidate for their studies. She was then given a full workup of genetic testing to confirm their clinical findings. Two months later she was called back for the results. It turned out Chelsea did not have EDS as we had all thought but instead an extremely rare genetic mutation, that presented like Vascular-EDS, affecting the vascular and connective tissue systems, including her heart. This was simultaneously a relief and one of the worst moments ever. Everyone, Chelsea most of all, was relieved to finally have a real diagnosis and answers after many years of medical issues that doctors couldn’t seem to figure out or relate to one another. Yet, here we stood in front of a world-class physician telling us he knew without a doubt why she had so many medical issues, illnesses, symptoms, and emergencies! However, there was more, this same physician also told us there was no official name for her condition. It was so incredibly rare that only 5 people in the world have now been officially diagnosed with it and they didn’t know the depth of complications she could face. This news was terrifying.

The diagnosis and genetic work up gave Chelsea everything she needed to move forward with appointments with Cardiology, Neurology, Urology, Rheumatology, to start but also meant she was not able to be a part of the EDS program. Unfortunately, there are no specialists, no known treatments/medications/studies, there is nothing for anyone to really work with since her condition is so incredibly rare. Each physician she sees has no idea about her mutation and has to start from scratch and treat symptoms and developments as they arise and use the knowledge of similar disorders to treat hers. It is not easy.

Chelsea has had a myriad of surgeries and complications some of which include: a heart loop recorder, a pacemaker, has had 3 heart ablations, had her appendix and intestine spontaneously ruptured, she had uterine/bladder/bowel prolapse surgeries, a hysterectomy, an indwelling catheter, cerebral spinal fluid leak, ankle/wrist surgeries, sepsis twice, has severe rheumatoid arthritis, countless hospital stays, and was on oxygen for a full year after Covid. This is just a portion of what she has endured in her young life.

On Christmas of 2022, just months after her prolapse surgeries and 6 months before an anticipated move to Michigan her incredibly supportive and wonderful boyfriend, Adam proposed. Her health and life were on an upturn and even though she was on oxygen 24/7, things were finally moving in a positive forward trajectory!

Then in February of 2023, she had a series of what was explained as mini-strokes that left her paralyzed on her right side. Hospitalized for nearly 2 months, she was able to wean off of the oxygen that had her tethered to a machine but now she was confined to a wheelchair unable to use her right side from the neck down and in need of a catheter.

Through all of this Chelsea has never given up. She has pushed through mentally crushing despair and defeat that would turn most people bitter and hateful. She has encountered discrimination in the healthcare system that I could write a book on. She has overcome physical pain, mental anguish, loneliness, isolation, and more. Somehow, someway, she has managed to do this and become the most compassionate, loving, kind, and intuitive person I have ever known. Her capacity for love, forgiveness, and understanding of others is like nothing I have seen in another human being. Her kindness to every person she encounters is like watching someone who can reach into another just by looking at them. Her nurses, staff at the hospitals, people online, even strangers…when she meets someone they are immediately drawn to her. She goes out of her way to make them feel comfortable, at ease, and leave happier than when they first come near her. I feel like you need to know this about her, it is something that has exponentially grown over the years. Even if you knew her when she was younger…you wouldn’t believe how incredible she is now. I learn to be a better human being every time I am with her. Chelsea deserves so much…so much more than this life is giving her.

Her medical diagnosis’s tell us her life expectancy is short. As her mother I refuse to believe that. I believe that there are advances in medicine everyday and that God has a bigger plan for such an amazing person!

Chelsea’s quantity of life is not wholly up to us to help with but her quality of life can be helped greatly! Right now Chelsea is in need of many things to help her quality of life and we cannot help her alone.

Chelsea just celebrated her 28th birthday. She spent over a week deciding where to go to dinner and what to wear. This would be the 2nd time in a year that she would go out somewhere other than a doctor, hospital, or our house. It is was a wonderful dinner with some family and worth the effort and subsequent “payment” her body would take from her for it. Not because she had cocktails or danced, but simply because the time she spent “getting ready” and the effort to get out of her house and to travel the short distance to a restaurant.

You see, it takes Chelsea all day to get ready because of the breaks needed to do accomplish it. Getting out of her house is difficult because she has to use a special sized wheelchair that fits the smaller doorways. The awkward entry into her home causes her body stress from the turning, twisting, and being pushed over thresholds that won’t allow for ramps. The ramp to her house is extremely steep and she can only enter or exit her home with the help of Adam or John, her step-dad, and this too causes extra strain on the muscles she does have control of. She is completely unable to leave the house without the help of one of them…this includes doctor visits and this leaves her feeling like more of a prisoner than her disabilities do.

We have looked into many options from portable ramps to custom built ramps, ramps for the front door and to the door into the house from their garage. We have talked to many people about options and even had plans laid out. After much research, the best option for Chelsea and her home is a freestanding portable wheelchair lift. This would work for the entrance to her house from their garage and even allow Chelsea the ability to get in and out of her home on her, own something she has not been able to do for over a year! The independence to just be able to go outside on her own and breathe fresh air would be like being release from a jail cell of her bedroom walls. Having this type of lift would also allow Chelsea to use transport services to get to doctor and therapy appointments on her own (giving more independence) and not have to make appointments based on Adam and John’s availability to get her in and out of the house.

Chelsea is able to get in and out of her wheelchair on her own from her bed but not from a couch so she is very limited even in her own home. She has a custom wheelchair built for her height, leg and arm length, etc. that she cannot use in her home because the doorways are too narrow and even had to have the bathroom door removed to allow for the narrowest of generic chairs to fit in. She needs barn/sliding door to be put in to give more privacy than the curtain currently installed. A new custom wheelchair for her home would allow her to be able to be in it longer as the generic ones are not ergonomically made and not comfortable for anyone who is paralyzed to be in for a long period of time.

She is also in need of a new shower chair and assistance devices such as bedside lifttable, blinds with remotes, a special rolling tool cart that can function as her personal needs station to keep her organized, and much more.

None of her supplies for her catheter (now a suprapubic) and no assistance devices are covered by insurance. These are things you don’t think about or don’t realize until you or a loved one needs them on a daily basis.

I know this was long, but for so long we haven’t said much about the medical side of things and needs because in Chelsea’s words “No one really wants to hear about all that is wrong and because there is so much and it is hard to explain and understand. And I don’t want conversations to be all about my medical issues.” So, here is a BIT of the long story and to say that Chelsea, Adam, and we could use your help. Anything and everything helps to get her the things she needs to be more of the independent 20-something woman she deserves to be. To give her more quality of life. If you can spare anything we would all be eternally grateful. All money goes directly to Chelsea’s needs for her lift first and then the other equipment she needs to make her life better. Thank you for the bottom of our hearts!

-Stacey (Andrus) Keyes