BENEFITING: Cure JM Foundation
My name is Zina Chung and I am the lucky mother to Karly Wise. Ever since birth she has been a blessing in my life with her infectious cheerful demeanor. A few hours after birth she was already smiling! Karly is the sweetest, funniest and most loving girl. She has the heart of gold and always wants to help others before herself.
It started with a rash on her cheeks that appeared around her 4th birthday in August 2013. I knew something was seriously wrong with my normally very active daughter when she was refusing to walk anywhere and would take naps. For about a month I saw pediatricians and dermatologists but no one was able to successfully diagnose Karly. Karly’s teacher called her friend who is Chief of Pediatrics and I told her all of Karly’s symptoms. She suggested I immediately see a neurologist and a rheumatologist.
Finally we had an answer. Karly was diagnosed with a rare and life-threatening autoimmune disease called Juvenile Dermatomyositis (JDM). It is estimated that between 1 and 5 children per million will develop this disease each year. Weak muscles and skin rash are the main symptoms of JDM but this disease affects every child differently. Normally, the immune system protects the body from infection but with an autoimmune disease like JDM, the immune system ends up targeting and attacking healthy tissues like muscles and skin.
Karly was hospitalized for 3 days while they pumped her body full of chemicals to help her. Those were the hardest 3 days of our lives. She was given high doses of Methylprednisolone (liquid steroids), Methotrexate (chemo) and IVIG (intravenous immunoglobulin). Since her muscles were affected she had great difficulty walking, climbing stairs became impossible, sitting cross-legged was painful, lifting her arms became tough and she was pulled out of her beloved ballet. Getting out of and into bed became a very troublesome task, but with physical therapy she was taught how to roll onto and out of bed. She also had to relearn everyday tasks like getting up from a sitting position, sitting down, climbing, walking up stairs and much more.
JDM is an incurable disease but with medication we hope to go into remission. For 7 months she took prednisone (steroid) orally daily, a monthly 6-7 hour IVIG infusion and she still continues to get her weekly Methotrexate shot given by me. She also is on thyroid medicine and folic acid to help with the effects of the chemo and calcium supplements. I am so thankful that Karly responded so well to the medications and is getting closer to remission. We have to take many precautions to ensure she stays on track. The sun is the enemy with JDM which can be very hard for a 4 year old who loves to play outside, but we make sure to protect her. I don’t want her to think that because she has this disease she cannot do the things “normal” children can do so I don’t hold her back.
Recently the JM community lost 2 brave children to this disease. With the rarity of this disease it is so hard to diagnose correctly and in a timely manner. It’s also really hard to know what combination of medicines will work for each child. Luckily, Karly is responding very well but I am fighting this fight with her to find a cure! The foundation I am supporting is Cure JM Foundation. Their primary goal is to find better treatments and ultimately a cure. When you donate to Cure JM you’re helping to fund the research necessary to meet these goals. This helps to raise awareness about this disease and provide information and support to those families affected by this.
I am so thankful to have wonderful people in my life and hope that you keep Karly and other children like her in your thoughts and prayers. With the rarity of this disease, your gift is vital to fund studies into finding the cause, best treatments and a possible cure. Help us find a cure!!
Another awesome way to help is to sign in to smile.amazon.com when you make amazon purchases. AmazonSmile is a website operated by Amazon that lets you enjoy the same wide selection of products, low prices, and convenience that you currently find on Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organizations selected by customers. Simply go to smile.amazon.com, login with your usual Amazon.com login, and select Cure JM as the charity you support.