Arkell Hawkins

Family and friends of Arkell Hawkins are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Catastrophic Illness. Arkell has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.

We would like to purchase a wheelchair accessible vehicle for Arkell because it is becoming more and more difficult to lift him and transfer him from the manual wheelchair to the truck/vehicle and our insurance will not cover any portion of the cost of the wheelchair accessible vehicle. The wheelchair accessible vehicles are very expensive and we need some help in raising funds in order to purchase it. The total cost for the van is 9,571.50 (this includes the $9,000 for the van itself, a $500 repair fee, $20.00 inspection fee, and a $51.50 registration fee.) We are also in need of a patient lift transfer chair for Arkell. The price tag for the patient lift transfer chair that we would like to get for Arkell is $369.00. I have included some pictures of the wheelchair accessible van and the patient lift transfer chair, if you would like to check them out. If you can donate we would greatly appreciate it. If you are unable to donate, you can still show your support for Arkell and our family as we navigate our way through Arkell”s journey with Duchenne Muscular Dystrophy. Please read Arkell”s story below as it will better explain what Duchenne Muscular Dystrophy is, how it has affected Arkell, what happens over time, and get to know Arkell a little bit better.

Arkell’s Story:

Arkell was diagnosed with Duchenne Muscular Dystrophy (DMD) at age 4. Duchenne Muscular Dystrophy is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function. It is caused by a mutation in the gene that encodes for dystrophin, a lubricating protein supports muscle fiber strength. When dystrophin is missing in the body, muscle cells are easily damaged, which causes progressive muscle weakness in the entire body.

Children with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. We found out shortly after Arkell’s diagnosis that I, Inga is a manifesting carrier of Duchenne Muscular Dystrophy (DMD). This was very tough to swallow at first and I blamed myself for giving this to Arkell. Over time I accepted it and stopped blaming myself. This was something out of my control and there was nothing that I could have done to stop this from happening. I never would have thought to do genetic testing before I was pregnant, while I was pregnant or right after pregnancy. What are the chances in this happening? Slim to none. We had never heard of or had a clue what Duchenne Muscular Dystrophy (DMD) was. Over time we have been learning and are still learning what DMD is, what equipment or devices we need now or in the near future, what changes to expect, what we can do now to help him to be as comfortable as possible, happy, maintaining mobility and or function in his upper body and what specific stretches and activities that we can do with Arkell.

Two therapies for Duchenne are approved for commercial use in the United States.

One treatment is Emflaza (deflazacort), a corticosteroid similar to prednisone used for decades to reduce inflammation in the muscle and slow the progression of the disease.

The other treatment is Exondys 51, an antisense oligonucleotide indicated for the treatment of Duchenne in patients who have a confirmed mutation of the DMD gene that is amenable to exon 51 skipping. Exondys 51 works by producing a small amount of dystrophin, the protein patients with Duchenne are missing.

Arkell has been taking steriods (prednisone since he was diagnosed at age 4) in order to help slow the progression of DMD (Duchenne Muscular Dystrophy) down. For over 20 years, children with DMD have been treated with steroids such as prednisone and more recently Steriods are the only medication proven to slow the progression of the condition. Prednisone is used to help improve strength and pulmonary function. Prednisone may also improve timed motor function, reducing the need for scoliosis surgery, and delaying cardiomyopathy onset by 18 years of age. There are many different side effects of prednisone and the newer steriod, emflaza (deflazacort). The main ones that we have seen happen to Arkell include, weight gain (always seems to be hungry), delayed growth, mood changes, and hirsutism (excessive hair).

In addition to Arkell taking steriods (prednisone), his cardiologist has put him on 3 different heart medications. These include, losartan, metoprolol (beta blocker), and eplerenone. Losartan helps to reduce cardiac muscle fibrosis and improving cardiac function. It also shows promise in attenuating skeletal muscle wasting. Metoprolol helps to manage cardiomyopathy, a heart condition that is a common complication of DMD. While ACE inhibitors and ARBs are often the first line of treatment, metoprolol may be added, particularly in cases of symptomatic heart failure or when ACE inhibitors/ARBs are not well-tolerated. The third heart medication that Arkell is on is called, eplerenone. Elperenone is a medication primarily used for heart failure, shows promise in managing cardiomyopathy in Duchenne muscular dystrophy (DMD) patients. Studies indicate that early use of eplerenone can improve or stabilize heart function, potentially delaying the progression of cardiac issues, a major concern in DMD.

Over time we noticed that Arkell was falling a lot, his gait changed drastically, climbing stairs became more and challenging for him, complaining that his back and legs hurt, walking on his toes, and walking was becoming more and more challenging. for him. He gradually lost the ability to walk up and down our steps at home. At that point in time we had to start carrying him up and down the steps in order to get him to the bathroom throughout the day or to his bedroom at night time. In the mornings we had to carry him down the steps and put him on the couch or chair and then got ready to go to school. Right before he stopped walking he could only walk very short distances and would need several breaks in between. A lot of encouragement and patience with him was what Arkell needed at this point in time. He tried really hard. It was becoming harder and harder for him to walk a few steps into his classroom in second grade. We tried not to push it too much with him because we wanted to preserve what muscle function that he had left and to not cause more damage.

Arkell stopped walking at age 9. It happened a lot sooner than we thought it would. We thought we had more time. Every child with DMD is different and it’s really hard to predict when they will lose the ability to walk. We will never forget the day that he stopped walking. It completely crushed us. On that day, Arkell tried to stand up from the toilet but couldn’t. He said that something was wrong with his legs. This was very difficult and heartbreaking for all of us. He did not understand what was happening to him. He had to start using a manual wheelchair full-time.

About a year ago, in the Spring we took Arkell to Kennedy Krieger Institute to pick up and test out his brand new power wheelchair from Nu Motion. He was so excited. His face lit up, he smiled, and he was on cloud nine. He drove it like a pro going through hallways and outside in the parking garage at Kennedy Krieger Institute. This made all of us so happy to see him smile and how happy he was.

Arkell finished 4th grade at T.A. Lowery Elementary School in West Virginia at the end of May this year. He had a great year. He was on the A-B honor roll all four semesters, earned the “Principals Award,” got to say the Pledge Of Alligence several times, and earned a certificate of achievement for “Pawsitive Attendance and Behavior.” We are so proud of him. Arkell is an amazing, smart, stubborn at times, loving, sweet, funny, creative, hard working when he wants to, affectionate, a pro wheelchair driver, etc. kind of kid. He is an animal lover (loves our family dog, Buddy) and a gamer too. Arkell loves to play games on his steam deck, PS2, XBox Series X, and recently on a Dell PC. He also loves to write list after list of items, such as names of video games, movies, food, candy, etc. that he sees on youtube or at home. He won’t admit to it that he likes to draw, color, and is very creative and has some natural talent when he draws.

It is so sad that summer is almost over and hard to believe that Arkell will be in 5th grade and his last year of elementary school this upcoming school year. Time has gone by so quickly. This summer we did some fun activities, like visiting and sleepovers with cousins, day trips, going to 5 Below, pool time (not his favorite, but he tolerates it) when we went to Cambridge, Maryland to celebrate my parent’s 50th Wedding Anniversary he got in the pool for a little bit, played some arcade games and other games with his cousins at the Hyatt Regency Chesapeake Bay Golf Resort, Spa and Marina in Cambridge, Maryland, playing video games with Dad and Kai, visiting with family, taking my wheels out for a spin (wheelchair), and playing with our puppy, Buddy.

That’s a wrap on Arkell. Please feel free to reach out to us if you have any questions, concerns, or want to learn more about DMD (Duchenne Muscular Dystrophy). Thank you for reading Arkell”s Story. God Bless.