Last December my son started to lose weight. We had recently switched a medication and his doctor and I thought this was a result of the med change. He grew pale and tired over time, and I continued to take him to the doctor and the emergency room where they ran tests and treated his symptoms but had no real sense of urgency. I watched him grow weaker and I worried a lot. It’s a terrible feeling to know in your gut that there is something very wrong with your child, but have no idea what it is. By early February Kellen was no longer able to go to school, and soon after we reached the lowest time of this whole ordeal.
In February and March Kellen was so ill that he was getting up multiple times through the night to use the washroom. One morning I found him asleep on his bedroom floor. Sometimes he does that, so I didn’t make an issue out of it. The next morning I found him there again, and when I asked him about it he said he couldn’t climb the ladder to his bed. He was dehydrated (and getting regular IV fluids), anemic and weak. I had my husband move his mattress to the floor, and it left a terrible sinking feeling in my chest. We thought we were losing him and I would check on him through the night because I was afraid that he would pass away in his sleep.
I thank God every day for Kellen’s Gastroenterologist, the diagnosis and the treatments that have brought him back to us. We are on the road to remission and I am so grateful. I wish he didn’t have Ulcerative Colitis, but knowing what he has and seeing him respond to medications is cause for celebration.
Right around the time we were seeing Kellen start to show signs of illness, a blogger friend was living a very similar existance. AnnMarie’s 18 year old daughter Alyssa was diagnosed with Crohn’s disease, which is a very similar disease to Ulcerative Colitis. AnnMarie and I understand each other. She has laid awake at night wondering if her child is still breathing. She has prayed for miracles, wished she could trade places with Alyssa and hoped that each new treatment would be the answer for her daughter. Unfortunately, they haven’t found the right treatment yet. She has a very severe case of Crohn’s Disease that has attacked every part of her digestive system. She hasn’t responded to the typical treatments and she hasn’t been able to try immunosuppressants because of the cost.
Remicade is the immunosuppressant that Kellen gets and it is very expensive. The cost of it varies depending on age and weight and how often you require treatment, but for Kellen it costs approximately $28,000 a year. He still needs to take anti-inflammatory meds along with it, which adds another $2500 a year. When you add in probiotics, vitamins, and the other host of meds that are needed through the year, the cost of medication for a year is equal to the income of a full time job. We have been incredibly fortunate to be approved for funding and coverage for most of Kellen’s medications. Alyssa has not been as fortunate.
Please take a minute to read Alyssa’s story and donate anything you can to help her get the treatment she needs. Click the widget below to read her story. You will not be required to make a donation, but it would be appreciated!