Benjamin and Levi Fountain
Shortly after Ben's diagnosis we had Levi tested and learned he had the same disorder. I thought lightning never strikes in the same place twice.
Many have expressed an interest in helping us meet immediate needs. Your donation will help support Ben and Levi with adaptive equipment, helpful therapies, and other needs that will arise.
Thank you for taking the time to visit Benjamin and Levi's Go Fund Me page. We ask that you prayerfully consider what God would have you contribute.
Please follow Benjamin and Levi's Caring Bridge site at https://www.caringbridge.org/visit/benandlevifountain to receive updates and leave Thoughts and Well Wishes.
Please pray for us them as we struggle to deal with this new reality. Pray we learn to cherish every day. Pray for a cure.
Benjamin is getting ready for another trip to Philadelphia tomorrow (Monday)and we are in need of prayer again. First, I think it is going to be very windy tomorrow! Please pray that our flight would be smooth, despite the wind. I hate flying and having an hour(or even one minute) of turbulence is extremely upsetting to me. When we flew, back in Nov., we had a solid hour of turbulence. The girl next to me, who was about to hyperventilate, was hanging onto the seat in front of her the entire time. I kept repeating my memory verses over and over again until I looked at Benjamin and Isaiah. They were just sitting there smiling, oblivious to the bumpy ride and enjoying every minute of it. It strengthened me and made me smile too. Thank God for my little people! I digress…Please pray for the blood draws. That it would not be (too)upsetting to Benjamin. Please pray for our time with the MD and the physical therapist. That Benjamin would be cooperative with them. Lastly, please pray for good sleep tomorrow night.
Thanks for praying!
I thought we should write and update everyone on the status of Benjamin's clinical trial in Philadelphia. If you don't know, research has produced very few advancements in muscular dystrophy treatment over the years. Remember all those Jerry Lewis telethons? They raised money for research in muscular dystrophy. The one treatment that exists is giving steroids, which serves to prolong muscle function. Unfortunately, long term steroid use has a series of unwanted side effects. The trial accepted 30 boys, of which, Benjamin was #30. All the boys were on placebo, 60mg or 100mg for the first 12 weeks. We will never know for sure, but I think we were on placebo for the first 12 weeks. The trial results from the first 12 weeks was that the drug has not shown the specific results they wanted it to, but it did show some improvement in the boys that were taking the larger dose. The researches are now writing an amendment to get all the boys on the 100mg dose. Some boys are farther along than others. Benjamin is on week 16 (4 weeks with actual drug, we think). In talking to some of the other parents involved with the study there seems to be a change around week 10 or 12 in which the boys have more energy, strength improvement and fall less. Will you pray that the drug works well with Ben's body and that the researchers make wise decisions moving forward?
Thanks for your prayers,
Stephen & Lisa