Being a mother is a job, but being a mother to a MTM boy is special job. We are super moms. We have had crash courses in respiratory therapy and in nursing. When know when something is wrong immediately and we know more than most doctors. Logan has a life threatening disease. Some days that is hard to take in, and other days it's not even thought of. Everyday with our little guy is a gift. Seeing him thrive and get stronger is very rewarding....almost like winning the lottery. I know that we are doing all of the right things to see the achievements that we have. Being a mother is so rewarding, but being a MTM mom is 1st place in my opinion.
Yesterday Alison Frase came to visit us. Alison just has such a sweet spirit about her and is so compassionate about our MTM kids. We learned from Alison about these colonies of MTM puppies that were born from affected MTM female dogs. These puppies at 17 weeks were so weak that they were dragging their hind legs and not able to eat on their own. They were pretty much to weak to live, like many of our MTM kids, and passing away. Then another litter of pups were born. These puppies were given this gene therapy injection at 9 weeks old, and 2 weeks after this injection, these pups muscle mass improved by over 200%!!!! These puppies were running around like nothing was wrong. I saw the videos myself. Everything about these dogs improved. Able to run, eat, and respiratory insufficiently was no longer a issue. The kicker to a of this is that this could be a ONE time injection for our kids and improvements are seen in the first week of injection. This is going to cure our kids and change the world of neuromuscular disease. If hearing this was not the best mother's day gift, I don't know what was. 2 years is the hope for clinical trials.... all we have to do is keep the funds coming in.
Brian and I have discussed having a HUGE benefit to help raise funds for the Joshua Grade Foundation next year. If you would like to help, please message us.
We are on our way to chapel hill for Logan's surgery. I will keep everyone posted.
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