My Impossible Medical Journey Fund
23 surgeries & more to come. Megan's family & friends are rallying to raise money for her genetic Joint Hypermobility Syndrome
Joint Hypermobility Syndrome is a painful connective tissue disorder. All money raised would go towards current and upcoming medical bills, physical therapy, medication, bracing, travel and lodging expenses, as well as temporary relocation to Vail, CO for continued care. Please donate if you can. $1 goes a long way. Our first goal is to raise $10,000
My 24 year old daughter Megan is one of the bravest, most determined, and humble people I know. She is also a HUGE Chicago Blackhawks fan. On September 21, 2005 at age 16, her life was changed forever. One jump for a football during high school gym class and a very bad landing caused a domino effect of rare and unusual injuries. Since 2006 Megan has had surgery in 4 different states (Illinois, Kentucky, California, and Colorado): 1 ankle, 2 right knee, both hips, 7 on her left shoulder/scapula and 11 on her right shoulder/scapula. The majority of all of these surgeries were to stabilize the joints and repair torn tendons and ligaments. She was diagnosed by a geneticist that she has Joint Hypermobility Syndrome aka Ehler-Danlos Syndrome-Hypermobility TYpe. This condition makes Megan's muscles, ligaments, & tendons "stretchy", weak, and prone to tearing. Before her injury date, Meg's goal was to go to college on a soccer scholarship. Today my once phenomenally active daughter's goal is to gain enough motion/functionality in both shoulders to do basic daily tasks, live somewhat pain free, and complete her college education. I call Megan a "Master Illusionist" because she has mastered the art of going about her day without people really knowing how bad she is feeling. Only those who know her best really know what's going on with her.
Throughout my daughter's surgeries, recoveries, doctor's appointments, physical therapy appointments, and all the severe pain she lives with, Megan managed to earn 2 Associates Degrees and is a member of Phi Theta Kappa honor society. She was accepted into Northeastern Illinois University this year but had to decline due to medical circumstances; she is thinking of getting a psychology degree. In August 2012 Megan was accepted to volunteer as a camp counselor at the WI Alliance Burn Camp. Due to medical reasons she had to decline. Instead of being a camp counselor she resorted to plan B. Megan used her ability to draw and donated 2 pictures for auction instead. Unfortunately the condition of her shoulders and shoulder blades has deteriorated and she is not able to draw at this time.
This past year has been a chaotic emotional rollercoaster. Megan is a one of a kind case. There is nobody else to compare her to since her whole shoulder girdle is involved: 2 shoulder joints and 2 shoulder blades. We have surpassed the treatment ability of our doctors here in Illinois. We have had to travel 8 times this past year. 6 times to Vail, CO to see the specialist for end-stage shoulder instability. 1 visit to the Cleveland Clinic in Ohio for a second opinion for the proposed treatment for her right shoulder: a reverse total shoulder replacement. Finally, 1 visit to Lexington, Kentucky to she her shoulder blade surgeon. Between all those appointments we meet with her long time Illinois surgeon in the event we run into a problem.
This upcoming year is going to be very challenging. The tentative plan is as followed. In January we will travel to Kentucky so Megan can have surgery on her left shoulder blade because the muscle transfer that she had done in 2011 is either really loose or detached from her shoulder blade. She will be braced for 4-6 weeks. This is going to be hell all the way around because she has no motion in her right shoulder. She literally only has motion at the elbow and wrist. 6 weeks after the left shoulder blade surgery, she will have Botox injected into her muscle to "paralyze" it. This is to prevent her muscle from contracting and ripping the newly reattached muscles off the bone. In April we will travel to Vail, CO to have the reverse total shoulder replacement on her right shoulder. This procedure is not typically done on people Meg's age because it lasts approximately 10-15 years; however, Megan's right shoulder is that of a 78 year old woman. She was diagnosed with chondrolysis which is an irreversible rapid breakdown of the joint cartilage causing severe arthritis. A reverse total shoulder replacement is very different than a standard shoulder replacement that you hear of regularly. This procedure will permanently reverse the position of the ball and socket with a metal ball and socket. After both of these procedures are done, we will need to stay in CO for an extended time so Megan can do physical therapy to rehabilitate both shoulders. If this were not enough, Megan has nerve injuries to both shoulders, as well as continued instability in her left shoulder. We don't know what the treatment will be for those issues yet. These 2 shoulders create just one big mess which doesn't allow Meg to drive or hold a job.
We set up this fundraiser to see if there is any way possible for you to help raise money for all of these medical expenses. As you can imagine, 23 surgeries, plus medical travel/lodging, testing, medication, and endless physical therapy has caused financial hardship. Even with insurance, the medical expense is ridiculously high. Insurance does not cover the cost of travel and lodging expenses even if the doctor you need is out of state.
Please share Megan's story to raise awareness about Joint Hypermobility Syndrome and to raise money for her much needed medical care.
If you want more information on her story just Google her blog My "Impossible" Medical Journey. There is story after story about what this 8 year and counting journey has been like.
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