Cheryl’s Recovery Journey

UPDATE

After 53 surgeries, soon to be 54, It was a difficult decision to make but Cheryl will be under going surgery on Thursday May 9th for amputation of her arm. It has come down to life or limb and the limb just has to go, her heart is far too weak to keep fighting the fight she has been fighting for so long. This will be an extremely long recovery road and any help is greatly appreciated !

Hi Everyone, my name is Hailey Hill! I am a longtime friend of Cheryl’s and I am here today on behalf of Cheryl and her loved ones seeking help for Cheryl’s long road to recovery.

As some of you may know Cheryl’s story and some don’t, when Cheryl was 2 weeks old her mom noticed Cheryls left arm would go almost purple when she cried. The family Dr really was concerned with it and sent them to see a cardiologist at Mac. They did testing every year for 4 years on her and when the Drs at Mac didn't have an answer she was sent to Sick Kids in Toronto. She was at Sick Kids for over 27 surgeries until she aged out at 18 and and extra year until they could find a vascular surgeon that was knowledgeable to work with her condition as it is very rare ! Her condition is called Parkes Weber syndrome - Hundreds of extra blood vessels and cappileries come off her heart and into her left arm. Her heart has been tested and measured and put through more tests than an 80 year old man! Her heart is 5 times the size of someone her age. They only form of treatment would be to embolize (burn off or glue) the extra blood vessels in her arm to reduce the strain on her heart. Over the last 8 years she’s endured almost 30 more surgeries and several stent insertions. In February 2017 Cheryl suffered a blood clot in her lungs from a coil they tried to use to remove a large vein. After 5 days in ICU she came home. Surgery after surgery and a year off to find a new surgeon she was finally treated at the Hamilton General. Surgeons there have been amazing but still at a loss of how to adequately treat her rare condition. In the last couple years they’ve taken very large veins and arteries resulting in lack of blood flow, ulcered skin, damaged tissue and chronic pain.

January 2023 after returning from a vacation Cheryl’s radial artery exploded and she lost 6L of blood. May 2023 it happened again. Drs repaired the artery and closed it off. These two surgeries severely affected the blood flow and nerves to her hand. She is now waiting for her thumb to fall off as it has died and Plastic surgeons said to save any viable tissue and what remaining blood flow there may be surgery isn’t an option - allowing to fall off is the best option.

since waiting for her thumb to fall off the open wound on her elbow has now become a bigger problem, this wound will not close and has now caused a massive infection in cheryls blood stream causing havoc to her body.

57 surgeries, 2 stents, 15+ MRI’s & CT Scans, 100’s of heart tests and 1000’s of medications and she’s loosing a body part.

Every surgery has risk, the consent forms list nerve damage, paralysis, amputation, death but never did we think it would come to this. She can’t work, she can’t drive now and now has to go through the trauma of her thumb falling off with talk of her arm being next. The surgeon has reached out to a team at a Boston hospital that is very reputable for conditions like Cheryl’s but funding is very limited so this is our next personal goal for her!

At only 27 years old Cheryl needs help with basic tasks such as laundry, groceries, cleaning, and much more as a young adult that lives on her own, with not being able to work and the talks of a prosthetic arm being the next best option for her to get a fraction of her quality of life back we are looking for any help we can get to extend Cheryl’s life.

Many thanks in advance! Absolutely anything will help this beautiful soul through such a traumatic and terrible time in her life.