My name is Francene and I am organizing this GoFundMe as we are raising money to fight for Ryleigh, the granddaughter of my dear friend and coworker Barbara. To sit with Barbara and listen to the updates of her beautiful, courageous granddaughter touches my heart in so many ways. More so, as a grandmother who feels that there is more that we must do for Ryleigh and then tries to figure out how. Thus, the creation of this GoFundMe account to assist with medical expenses, traveling expenses, and everyday living expenses for Ryleigh that many of us don’t think twice about. Something that no one should have to worry about when you are facing a life-altering disease for a little five-year-old girl. Ryleigh has recently been diagnosed with Juvenile Dermatomyositis (JDM). Please continue to read Ryleigh’s story as written by her grandmother.

Hi, I am Barbara, who lives in Florida and trying to help with some expenses for my granddaughter, such as overnight stays close to the children’s hospital for treatments, and other needed items, but due to an accident, I have been cut down to 3 workdays per week indefinitely and cannot give assistance with Ryleigh’s expenses as needed.

Juvenile Dermatomyositis is an extremely rare and lifelong disease, and unfortunately, there is no cure. The cause of JDM is still unknown. This disease affects the muscles, blood vessels, and skin. It can also affect the brain, liver, lungs, kidneys, and eyes. It is an autoimmune disease where the body’s own immune system attacks the muscles, blood vessels, and tissues causing an inflammatory response, many complications, and the need for constant 24/7 care, several medications, and special hospital treatments.

Ryleigh was a healthy, rambunctious 5-year-old, loving life and everyone in it. Such a happy-go-lucky little girl. She was nonstop all day with energy and could talk up a storm. She was so excited to start kindergarten and cheerleading. She had made the cheerleading squad and was a flier!

During this past summer, Ryleigh developed a rash after being in the sun at the Jersey shore on vacation. The doctor diagnosed her with eczema and prescribed medication. It was about time to start school, so Ryleigh had to have her vaccines on another visit, which included the MMR vaccine.

Ryleigh’s rash proceeded to get worse, and there was swelling around her eyes, so there was another trip back to the doctor where it was said to be eczema again and another medication prescribed. Ryleigh’s rash was now spreading to her knuckles, knees, and hands, and she also started to develop little bumps in her skin. She had started to complain her legs hurt, she was tired all the time, but she had just started school and cheerleading, so you would think this would be a normal reaction for all these new activities.

Then it was noticed she was not walking right. She was having trouble going up and down the stairs. Another trip to the pediatrician’s office and this time a different doctor said she needed to be seen immediately by a dermatologist. Luckily, she was seen the next day, and the family was told it appeared she had Lupus or Lyme Disease. Blood work was ordered, and a referral to a Pediatric Rheumatologist was made at the Children's Hospital in Morristown.

Things got worse while waiting for the appointment. Ryleigh could not sit up. She could not get herself up off the floor, she could not walk without falling, and after just a few movements, she had to lie down. She was exhausted and in pain. Calcinosis forms with this disease and causes pain and disability.

Finally, at the children’s hospital with a specialist, blood work, and tests, it was explained that Ryleigh was diagnosed with Juvenile Dermatomyositis. The rash she had in the summer was the first sign of the disease. When the MMR vaccine was given with the school shots, which is a live vaccine, it pushed this disease into turbo speed. The specialist admitted her into the hospital and began treatment, saying there was hope, even though it was such a rare disease, she had seen children in a worse state of it. This was a heartbreaking diagnosis for all of us to process. Something she will have to live with for the rest of her life. One of the things she must avoid for the rest of her life is the sun. Something many worship would cause her disease to worsen. Having a compromised immune system puts her at risk for infections and illnesses.

Ryleigh was also diagnosed with Celiac Disease, and therefore must avoid any food with wheat, rye, or barley. Consuming these ingredients will cause an immune response that attacks the small intestine and can lead to permanent damage. Gluten-free foods are more costly than your ordinary groceries and sometimes can be hard to find in some areas.

Ryleigh is on several medications daily, including steroids, Prednisone, which have caused weight gain and belly issues, Hydroxychloroquine, Folic Acid, and a weekly chemotherapy drug, Methotrexate, by injection her mother must give her. She is also now undergoing IVIG (Intravenous Immunoglobulin), which is a two-day outpatient procedure at the Children’s Hospital in which she receives an eight-hour transfusion of purified plasma antibodies from donors. There is also physical therapy she must attend.

These medications and treatments will go on for years to come and as we all know pharmaceuticals come with side effects but there is no choice here. It is the goal to get this disease in remission, but we have been told that could take years. Her bloodwork is all over the place every time they test it.

At the present time, due to caring for Ryleigh, her mother can only work as a babysitter for a close family friend who has a child Ryleigh’s age. This way Ryleigh can go with her. Ryleigh and Harley have become the best of friends. When Ryleigh could not walk to go Trick-or-Treating and had to be pulled in a wagon, Harley insisted she do the same. Precious.

Due to these factors, donations would help with her rapid weight gain and clothing, gas for many trips back and forth to the Children’s hospital, which is an hour one way from Ryleigh’s house and stays close by on weeks two-day treatment is needed. She needs a wheelchair as she is just too heavy for her mother to carry her, and she can no longer fit in a stroller. The van her mother drives to all these appointments is older with 170,000 miles on it. When things go wrong, and it needs to be serviced, and an appointment is missed because of the vehicle, it causes so much added stress.

Ryleigh’s disease has been classified as permanently disabled. To go through the paperwork and system will take up to a year. We have, as a family, read and researched everything we can on this disease. I have even spoken to family members of those who have this disease and want to thank them for their insight, comfort and continued reassurance.

Even though she is undergoing all of this, Ryleigh is still that little girl loving life and all others in her life. Her favorite past time is crafts. She loves making gifts for others. It’s what brings her a lot of joy now. She cannot attend school and has just started a virtual school program for a brief period of a few days a week. She is so brave; she takes her medication several times a day with no issues and knows when she is supposed to have them. Even her weekly chemo injections. Her bravery and strength help us all to be stronger for her even though our hearts are breaking on the inside. When I talk to her and tell her I love her, she always replies “I love you more.” That is impossible, I say.

Please consider donating to help fight for Ryleigh’s life. Help in the fight to keep this loving, compassionate and courageous little girl healthy. Please donate and share. The more awareness for Ryleigh the better chances we have to give her the care needed. We pray for continued research on this rare disease and that treatments and cures are found. NO Child should have to go through this, and NO Parent or Grandparent should have to worry on how to care for their child.

For anyone who has any questions or needs to reach out to me you can by email at [email redacted]. Thank you.

This go fund me account has been set-up for Ryleigh’s expenses and funds will be distributed on an as needed basis. The account will be administered by Barbara directly. All funds will go directly to the care that is needed for Ryleigh including special food, clothing, due to rapid weight gain, travel expenses and medical expenses.