The disorder is myotubular myopathy, a disorder that affects only boys that carry the genetic mutation and simply put, does not allow any of their muscles to develop. Breathing, eating, coughing, moving -- all activities that are challenging or impossible depending on the severity.
When we first heard the news it was devastating, but also confusing. Wesley was so much stronger than Slater had been! He moves and he breathes without invasive ventilation support. His muscle tone isn't quite normal and he is unable to swallow or clear secretions adequately, but he has never looked or acted completely limited; so we are not giving up hope on him.
Our worst fear was that my sweet sister, brother in law, and their 4 year old Beau would lose another angel to this devastating disease, but this won't happen! Right now it isn't possible to know what his breathing abilities will be due to complications from the breathing support he has been receiving. Because of this, Wesley is going to get a tracheostomy and gastric feeding tube placed, which will most likely help him to move past a lot of the complications that have been ailing him and go home. There are possible options for treatment in the future, but I will update on those as more is known.
As you can imagine, this has put a huge financial stress on the Ross family and they will continue to face medical costs in the future. I'm setting this up as I know a lot of people who care about Tess, Derek, and Beau and would like to help in some way. All three have amazing strength, it blows me away to see how they are able to cope with this after already dealing with such a tragic loss in their lives.
They need prayers, love, friendship, and support to care for baby Wesley and, on their behalf, I'm asking for help to pay for their medical expenses as well. All money raised will go to them and be used to pay hospital/surgical bills and help support them as they have been forced to take time away from work to care for their baby boy. Any amount will help and be so appreciated. I will update this page periodically so you can see Wesley's progress.
Thank you for helping me support my loved ones!
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