Grayson Nicks

Grayson is a 12 year old boy in 7th grade residing in Bartlett, Illinois. He lives with his dad, Paul, his mom, Kelly, and his 10 year old sister, Scarlett. In August of 2018, the summer between his kindergarten and first grade years, Grayson was diagnosed with Duchenne Muscular Dystrophy at the age of six. Duchenne Muscular Dystrophy is a rare genetic disorder characterized by the progressive loss of muscle function. Boys with Duchenne, such as Grayson, do not produce a protein called dystrophin. Without dystrophin, muscles are not able to function or repair themselves properly.Presently, we are working to find financial assistance for the purchase of a mobility vehicle. We know there are more major medical expenses for Grayson in the future, but acquiring this vehicle is the next big thing that is needed. We have been researching the various van and SUV options and working with salespeople at multiple dealerships to aid in finding the right vehicle for our needs.This diagnosis has had and still has a huge impact on Grayson’s life. While Grayson is not wheelchair bound at this moment, it is inevitable in the future of boys with Duchenne. Grayson relies on a push wheelchair or a mobility scooter to get around. He can no longer navigate stairs or walk long distances. He is easily fatigued when he walks short distances (around his home, for example) and often needs to take breaks to sit and rest. He has also lost the ability to rise from a seated position to standing, which is especially challenging to his dwindling independence.We have twice a year DMD clinics for Grayson’s care at Lurie Children’s Hospital in Chicago. While the visits do go through our medical insurance, it is still a large sum that we owe. He also gets new orthotics at Hanger Clinic every year, which also takes a toll on the finances. In 2022, we put an addition onto our home, a first floor bedroom and full ADA bathroom for Grayson, taking out a home equity line of credit to be able to afford it. Those monthly payments are interest only, so we are paying extra each month to bring down the principal. We are a one-income household, and we anticipate additional medical needs in the future. Financial assistance would go a long way to help our family.Our current mode of transportation for Grayson is Kelly’s minivan. Paul drives a four door SUV and it is very challenging to get Grayson in and out of the vehicle. A parent must lift him into and out of the minivan each time. There is concern that doing this will one day injure either Grayson or the parent doing the lifting. We also must always have either his mobility scooter or wheelchair with us, as even the small distance from our garage to the front door is too much for Grayson to walk without immense fatigue. We know that a mobility vehicle will be required, for certain once he’s in a power wheelchair, but the sooner the better.———– Family and friends of Grayson Nicks are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.Grayson has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to 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!