Ella R. Fundraiser
Donation protected
Hello everyone! Please read Ella's story below. We work with Ella's dad and would love to send the family on a safe and fun vacation, something much needed in their lives right now. I am grateful for any donation you would be willing to make.
Thank you!
Kate
Ella’s JDM Journey
Mid October of 2019 we noticed that Ella had started to become weaker than usual. She was physically lagging behind and wasn’t able to move as a six year old should. For about a week we thought that maybe she was just tired and her body was sore from physical activity at school and needed some extra rest. Then came October 28th. This night changed our lives forever. Ella was completely unable to lift her little head off of her pillow to get out of her bed. Her body was hot and she had a bright red rash from her head to her belly button. We then decided it was time to take her to Cincinnati Children’s Emergency Department. From there we were admitted and Ella was diagnosed with a very rare autoimmune disease called Juvenile Dermatomyositis. (JDM) This disease causes the immune system to attack the muscles and skin in a child’s body as if they were an infection or virus. It also causes a child not to be able to be exposed to a lot of sunlight due to the fact it causes flares in the rash. After spending some time in the hospital our team of doctors felt confident that we had a good care plan to get her into remission within six months to a year. Ella started a high dose of steroids and a micro dose of a chemo drug called Methotrexate. She also started physical and occupational therapy to help regain the strengths JDM caused her to lose. As time went on Ella was able to regain most of her strength and abilities. This is when we though we were reaching the point of remission. However, when we tried to lower her dose of steroids her weakness started to come back and the dermatology part of her disease was still “wrecking havoc“ on her body. At that time in March Ella not only had to remain on the high doses of steroids and methotrexate they added a monthly infusion called IVIG. This is a blood product that helps boost her immunoglobulin. This effects of this treatment on Ella have been somewhat of the effects one would have with chemotherapy. For the first 48 hours after, Ella has severe migraines, vomiting and sensitivity to sound and light. Unfortunately, the benefits of this treatment outweigh the risks and it’s not something we can change. Moving forward to July, Ella had started to become nauseated and vomiting almost daily. We had also noticed that her skin was turning completely red again. After a visit to the hospital and some blood tests, we discovered that Ella’s rash is still festering an had to add yet another medication called hydroxychloroquine. We were also referred out to a gastroenterologist and endocrinologist because of some of her lab results. Through gastroenterology we were able to realize that her gastric system is still healthy but have to monitor her throughout the years because of the effects the medications can have, especially on a child so young. Hence the reason of the daily nausea and vomiting. Through Endocrinology, we have learned that Ella has some Thyroid issues. We are still going through testing to get a solid answer for what exactly is wrong. Pituitary tumors, thyroid resistance, and hypothyroidism are all currently being explored. As we stand today, the effects of the several different medications Ella has to take put her through more than anything a child should ever have to endure. Everything from rapid weight gain, headaches, fatigue, vomiting and more. On October 26th, we visit with rheumatology for another game plan. Her disease is so rare and not going how we planned that this visit will be with several lead doctors and fellows at Cincinnati Children’s Hospital. Everyone is working together and trying to come up with something to bring our sweet little girl into remission and to correct the thyroid issues. Our future, at this point, is unknown. We do know that we will remain in and out of Children’s Hospital for years to come
Thank you!
Kate
Ella’s JDM Journey
Mid October of 2019 we noticed that Ella had started to become weaker than usual. She was physically lagging behind and wasn’t able to move as a six year old should. For about a week we thought that maybe she was just tired and her body was sore from physical activity at school and needed some extra rest. Then came October 28th. This night changed our lives forever. Ella was completely unable to lift her little head off of her pillow to get out of her bed. Her body was hot and she had a bright red rash from her head to her belly button. We then decided it was time to take her to Cincinnati Children’s Emergency Department. From there we were admitted and Ella was diagnosed with a very rare autoimmune disease called Juvenile Dermatomyositis. (JDM) This disease causes the immune system to attack the muscles and skin in a child’s body as if they were an infection or virus. It also causes a child not to be able to be exposed to a lot of sunlight due to the fact it causes flares in the rash. After spending some time in the hospital our team of doctors felt confident that we had a good care plan to get her into remission within six months to a year. Ella started a high dose of steroids and a micro dose of a chemo drug called Methotrexate. She also started physical and occupational therapy to help regain the strengths JDM caused her to lose. As time went on Ella was able to regain most of her strength and abilities. This is when we though we were reaching the point of remission. However, when we tried to lower her dose of steroids her weakness started to come back and the dermatology part of her disease was still “wrecking havoc“ on her body. At that time in March Ella not only had to remain on the high doses of steroids and methotrexate they added a monthly infusion called IVIG. This is a blood product that helps boost her immunoglobulin. This effects of this treatment on Ella have been somewhat of the effects one would have with chemotherapy. For the first 48 hours after, Ella has severe migraines, vomiting and sensitivity to sound and light. Unfortunately, the benefits of this treatment outweigh the risks and it’s not something we can change. Moving forward to July, Ella had started to become nauseated and vomiting almost daily. We had also noticed that her skin was turning completely red again. After a visit to the hospital and some blood tests, we discovered that Ella’s rash is still festering an had to add yet another medication called hydroxychloroquine. We were also referred out to a gastroenterologist and endocrinologist because of some of her lab results. Through gastroenterology we were able to realize that her gastric system is still healthy but have to monitor her throughout the years because of the effects the medications can have, especially on a child so young. Hence the reason of the daily nausea and vomiting. Through Endocrinology, we have learned that Ella has some Thyroid issues. We are still going through testing to get a solid answer for what exactly is wrong. Pituitary tumors, thyroid resistance, and hypothyroidism are all currently being explored. As we stand today, the effects of the several different medications Ella has to take put her through more than anything a child should ever have to endure. Everything from rapid weight gain, headaches, fatigue, vomiting and more. On October 26th, we visit with rheumatology for another game plan. Her disease is so rare and not going how we planned that this visit will be with several lead doctors and fellows at Cincinnati Children’s Hospital. Everyone is working together and trying to come up with something to bring our sweet little girl into remission and to correct the thyroid issues. Our future, at this point, is unknown. We do know that we will remain in and out of Children’s Hospital for years to come
Organizer and beneficiary
Catherine Mertz
Organizer
Cincinnati, OH
Sean Reifenberger
Beneficiary