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On July 7, 2018 Derrick was diagnosed with a rare medical condition called Bethlem Myopathy. Bethlem Myopathy is a type of Congenital Muscular Dystrophy that involves progressive muscle weakness, joint stiffness, and skin abnormalities. This diagnosis came with various emotions, questions and thoughts but after 9 years of unexplained walking difficulties, pain, sleepless nights, and excessive fatigue it was a relief to finally have an answer.
Upon diagnosis, doors quickly opened. Derrick was purely excited about this because he was finally going to get the wheelchair he’d spent years asking for, much needed rest breaks during school, full access to the service elevators where we lived and preferential parking. Life was finally becoming more manageable and enjoyable for Derrick!
As a mother, I enjoyed Derrick’s growing smiles as he was no longer in constant pain and exhaustion. However life for the family as a whole became increasingly challenging in many ways. After 15+ years at my job I had to cut my hours by more than half to accommodate doctors, therapies, at home programs, advocating at school, educational research and trainings, various applications, and moving into a wheelchair accessible home. Surviving on half my income has been a rocky road to say the least.
After a year and a half we have found solid ground with a happy healthy (as can be) boy, his new power chair, and moving into an accessible home. Derrick wants to be a professional gamer when he grows up. He is an avid cat lover who recently adopted an orange tabby named Sunkist, enjoys water sports, and is a star at school in his powerchair. While Derrick was born with muscle weakness, Bethlem has served as a strong foundation to building advocacy skills. His muscles may be weak but his mind, heart, voice and sense of humor are strong and growing stronger every day!
We are currently in much need of a wheelchair accessible vehicle. With my limited income I am using Help Hope Live to access funding for a converted vehicle and other uninsured medical costs associated with this life long disease. A wheelchair accessible vehicle will help Derrick access community activities, school when the bus is not available and various therapy appointments while building confidence and independence. The first activities he will be accessing in the new vehicle are wheelchair sports and his first ever trip to Disneyland!!!
Your donations in honor of Derrick Grimm to Help Hope Live are paid directly to the medical vendors and tax deductible to you. You can be sure donations will be used to only pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Derrick, Brandon, and I are so grateful to be able host a raffle through Help Hope Live!
We received 2 major donations to our raffle. Thank you so much to:
Claudia at Viva O Sol in Los Gatos
Keara at Do or Dye Salon in San Jose CA
Please consider donating and registering into the 3 raffles in August! There is a link to the left of this update called "Fundraisers, Raffle Tickets Here".
SCARED, HUNGRY, TIRED, NEED to use the restroom, and grateful! Please allow me to paint a picture of the HEALTH and SAFETY issues Derrick faces without a powerchair accessible vehicle followed by our gratitude for the community:
Dear Supporters,
Yesterday, at about 7:00am, Derrick and I were driving on Southbound 101. We were stuck in gridlock traffic behind a semi-truck that had just turned over. Our car battery began to die while we idled behind the accident. Just after we passed the accident our car stalled on the freeway. We were able to pull into the center divide where we called AAA for a tow truck.
We were both very scared until the CHP towtruck arrived to drive us to safety. I will post a picture of the scene behind us as we waited in the car on the freeway.
The CHP towtruck driver was only allowed to drive us and our car to a safe location, just off the closest freeway exit. There he dropped us off with our broken down vehicle. We then waited for AAA to come with another tow truck to take our vehicle to a repair shop.
At this point we were still very scared, hungry, and needed to use the restroom. Even though we were now in a PERCEIVED safe location, with resources like food, water, and bathrooms nearby, Derrick was faced with the INABILITY to access them. He was not able to ambulate to the nearby locations. It suddenly dawned on me that we truly NEED Derrick's powerchair with us while we are away from home.
For the 7+ hours that we were without a vehicle, and in a different city than our home, we were extremely limited to essential resources such as food, water, bathrooms, and safety. The reality, that Derrick's limitations and need to have his powerchair in the community is a HEALTH AND SAFETY ISSUE, became more apparent to me!
When the second tow truck driver arrived, due to the current Santa Clara County Health Orders, Derrick and I were not allowed to ride with the driver to the repair shop. The car was towed and we were left, on the side of the freeway, to find alternate means of transportation to the repair shop.
We needed a new alternator and, as the heat outside climbed to over 90 degrees, we had to wait several hours for the part to arrive and be installed. The auto shop had a shuttle that dropped us off at the nearby Target. The Target we went to had a Caroline’s Cart that Derrick could sit in while I pushed him through the store. However our SUSTAINABLE food options were limited to Target’s food because Derrick could not ambulate to the nearby restaurants.
About an hour before our vehicle was ready, Derrick began saying, "my brain is more than 100% insane right now, I want to go home!" At this point, without a sustainable meal all day, my brain was becoming mush too.
Had we had the powerchair with us, Derrick would have been able to ACCESS, what someone who could ambulate, would access for health and safety, in the same situation. He would have also been able to endure the wait more comfortably in his custom powerchair and maintain his sense of SANITY.
I feel stronger than ever that Derrick absolutely needs the vehicle conversion we are fundraising for. It is no longer just about enjoying the community. It is now about health and safety!
Please help us raise the $25,000 we need for the $60,000 accessible vehicle we are hoping to purchase by June 30.
Because every story has a reason to be grateful:
Yesterday, I learned, California Highway Patrol offers this free service, thank you California taxpayers and thank you to Jose Rodriguez who brought us to safety: https://www.chp.ca.gov/programs-services/services-information/freeway-service-patrol
Thank you to Community Garage in Morgan Hill for your caring and speedy assistance!
Thank you to my friend, Carolyn, for dropping everything, masking up and transporting Derrick and I to our car!
Caroline's Cart, ask the manager at the stores you shop at if they have them available for the disabled: https://technibilt.com/carolines-cart/
Thank you to my boss, Michael, for understanding and helping me!
Dear Supporters,
While Derrick still has not raised enough funds to purchase a powerchair accessible vehicle, Shelby decided to attempt taking Derrick on his first trip to Disneyland!
Shelby would like to share the family's experience traveling to and from Disneyland. She does not want to discount the wonderful time they had but for the purpose of fundraising she will share the challenges faced on their trip.
The number 1 biggest challenge faced was transportation.
"We went to Disneyland under the impression that Uber had WAV service where we were going."
Those unfamiliar with Uber WAV, Uber provides affordable rides in wheelchair accessible vehicles. A WAV is the same cost you would pay for a UberX, which is very reasonable.
When the family arrived in LAX, they used the Uber app to request a ride to the hotel. It was stressful for the family when Uber did not have any WAVs available. They instead requested an Uber Assist which ended up being a tiny Prius. The driver was kind enough to squeeze the wheelchair into the front seat of his car. This set up was unnerving as the chair was partially in the drivers seat. Again on the way back to the airport, a Toyota Prius picked the family up from the hotel.
Because of the difficulty with transportation, their time in LA was restricted to the hotel and Disneyland. "We had a wonderful time but it would have been great to have more healthy food options by going to the grocery store and exploring the city we were visiting a bit more."
The 2nd challenge faced were the inclines and declines throughout the Disneyland Park. This was not only a challenge for mom physically, spending 12+ hours pushing a wheelchair up and down hills but it was scary for Derrick. "Derrick not only has physical challenges but he also has various sensory challenges." Derrick was afraid of the change in speed on the declines in the park. Mom did the best she could to muscle the chair by pulling back so Derrick was able comfortable with the speed.
Mom says that having Derrick's powerchair with them their own accessible vehicle would have provided a safer and more comfortable experience in Los Angeles, not just for Derrick but the entire family.
"I am hoping to get Derrick out into the world more, a powerchair accessible vehicle would help immensely!" ~Shelby
Your donations in honor of Derrick Grimm to Help Hope Live are paid directly to the medical vendors and tax deductible to you. You can be sure donations will be used to only pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
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xoxo - love you guys
Leilani Berry
Wishing you the very best! I’m happy to circulate this campaign information so that your goal gets a lot closer ASAP.
T Stoffan
For Chipotle! =D
Meredith Balogh
Glad I can help out. Wish I could have helped with your car. Crazy that it died right there and then without any warning. Usually a light comes on the dash when the alternater stops working. But sometimes they don't.
Scott Christensen
I am excited for you to get the vehicle you want and need. I am happy to contribute to your and Derrick's well-being. :)
A'nna Aguilar
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Derrick R Grimm
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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