Easing the Burden: Aid for Damar and Will

This is a story about friendship, genetic conditions, true love, and the desire to ease a burden.

Friendship. The beautiful bride pictured in the main photo is Damar. Damar and I (Gretchen) have been friends since elementary school. We have memories that go back over 30 years, such as this class trip to Washington, DC in the mid 90's.

Our birthdays are only 8 days apart and we've been a part of each others highest moments as well as low ones. Beyond a shadow of a doubt, some of the best laughs I've had I've shared with Damar. She has a big laugh that is highly contagious - and slightly embarrassing if you're in a quiet place. But, I guess that's just another thing we have in common! LOL Regardless of what states our lives have taken us, we always made it a point to stay in touch. I can't say how thrilled I am that we both managed to settle down only 20 minutes away from each other in New Jersey!

Genetic Conditions. I don't have the exact timeline, but when we were in high school, her dad was diagnosed with a hereditary degenerative disease called Spinocerebellar Ataxia Type 2 (SCA2). This is a disease of the central nervous system in which genetic defects lead to impairment of specific nerve fibers carrying messages to and from the brain, resulting in degeneration of the cerebellum (the coordination center of the brain). Symptoms can include: movement problems, specifically difficulty with coordination and balance (ataxia); slow eye movements and involuntary eye movements (nystagmus); difficulty swallowing and indistinct speech; muscle weakness in the muscles that control eye movement (ophthalmoplegia) and weakness in the limbs (peripheral neuropathy), muscle cramps and tremors, muscle wasting (atrophy), uncontrolled muscle tensing (dystonia), and involuntary jerking movements (chorea); cognitive problems such as problems with short-term memory, planning, and problem solving, or an overall decline in intellectual function (dementia); respiratory problems; fatigue. For more details, please visit the National Ataxia Foundation's website.

Being hereditary, both Damar and her sister Brooke were tested and the results showed they both had it. It was only a matter of time before symptoms started. I remember having conversations with Damar about how she felt like a ticking time bomb. With SCA2, the earlier the onset, the worse. Dr. Cunningham, as I always called him, is bound to a wheelchair but is otherwise doing OK. Brooke's onset was when she was in high school and sadly, she passed away when she was just 26 years old.

Damar's onset was in college. Now that we're in our 40's, things are starting to get worse. More on that in a moment...

True Love. In 2015, God brought Will Smith into Damar's life. No, not THAT Will Smith :) But the Will Smith who could see through Damar's genetic condition to the amazing, funny, sarcastic, sassy, loving, fierce, wonderful woman that she is. See, Will knows a thing or two about health trials and tribulations - and not letting them define you. More on that in a moment... By October of 2017, they were married and continue to support and love each other each and every day, despite the hands they've been dealt.

Easing the Burden. The past four months have been really hard on Will and Damar. You'll be hard-pressed to hear that coming out of her mouth, for she is as stubborn as she is wonderful LOL But let me go back to Will's story.

By age 2, he was diagnosed with Type 1 Diabetes. There have been multiple complications and health issues that surrounded his diagnosis, the most serious being the need for a kidney and pancreas. Amazingly, on August 16, 2024, he was able to get both of those organs transplanted! However, this was the first of 8 surgeries he would have to have to endure in the next couple of months.

You see, the pancreas wasn't viable, so they had to remove it. Then he had a bowl obstruction and fecal matter in his lungs. He was put on ECMO - a life-saving therapy that uses a machine to temporarily replace the heart and lungs of a patient who is in cardiac or respiratory failure. During ECMO, blood is pumped out of the body and into a machine that removes carbon dioxide and adds oxygen. The oxygenated blood is then rewarmed and returned to the body. ECMO can help the heart and lungs rest and heal from a respiratory infection. (Shout out to Google's AI Overview for explaining that one!)

He came through that like the rock star he is only to discover a couple of weeks later he needed another surgery to remove infected tissue. As if that wasn't enough, he developed a blood clot that caused nerve damage in his right leg, rendering it unusable. Currently, he is in pain 80% of the time and it's hard to walk, even with a walker.

Back to Damar, her symptoms are worsening. She too struggles getting around and the latest challenge is transferring from the wheelchair to the couch and vice versa. It literally breaks my heart to see these two amazing, beautiful people - whose faith has never wavered, mind you - go through all of this. Damar has been on disability for a while now, but due to the recent whirlwind that Will has gone through, he is now out of work. He is trying to patiently wait for his disability to come through, but there is no telling when that will be and rent and utility companies won't exactly wait patiently.

It's even more frustrating knowing just how good of a provider Will has been for Damar. He is a hustler in all the best ways, even starting his own landscaping business at one point while working nights as a truck driver. He's one of the hardest workers I've ever met and I love knowing that is who is taking care of Damar. Now they have to figure out how to take care of each other without the financial support Will previously, selflessly, provided.

That's where this page and - hopefully - you all come in. I know tons of people love both Will and Damar. If we can each give just a little, I'm hoping we can help ease the financial burden as the goal set here will help them with rent for the next 6 months. That will give them 6 months to focus on Will's recovery and healing, on Damar's continued rehabilitation, and on settling into their new normal.

Thanks for reading this through and don't forget to keep them in your prayers!

Photo above features me singing my heart out, Damar cracking up at me, and Will busting a move at my wedding in October 2021. Wanted to leave this on a joyful and uplifting note <3