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Perfectly Imperfect



Our apologies for taking so long to update the blog!


It's all good news on our end right now. Brooks will be coming home soon and is getting bigger and more playful every day! He's pretty hilarious and his smiles keep everyone else smiling. We are excited and nervous to transition home with him, but we are so grateful our family will be under the same roof every night for the first time in 7 months. It has been a long journey so far!


That being said, I wanted to take this time to update you guys on the fundraising efforts and the excitement we feel with regards to gene therapy becoming a reality very soon.


Since February (the month Brooks was diagnosed with SMARD) the non-profit, smashSMARD, has raised about $500,000. That's half a million bucks in 5 months, people! All of you have played a major part in this, which means a few thousand people have all chipped in. God is good. Please continue to share our story. Every. Dollar. Counts. Clinical trials are very expensive and we still have a lot more money to raise to reach our current goal of $1,500,000.


While our hope is for our story to reach beyond our SMARD family communities, especially through the #smashSMARDchallenge, there have been lots of local events for fundraising in the various communities where children are affected with SMARD. Schools, restaurants, corporations and individual families are stepping up all over the world to find a cure and we are making major strides to get these kids treatment. We are so hopeful.


The recent FDA approval of the Spinal Muscular Atrophy gene therapy drug, Zolgensma, provides much hope for us as well. Although SMA is a different disease on a different gene altogether, the same hospital that achieved this milestone for SMA kids is working on pre-clinical research for SMARD. I would highly encourage each of you to follow the link entitled "Gene Therapy Research" for some encouraging and informational articles. There is one highlighting Nationwide Children's Hospital and how they are quickly becoming a hub for gene therapy research. These people are inspired by our kids and working hard to make treatment a reality.


Also at that link are incredible stories about gene therapy success for other neuro-muscular diseases, specifically myotubular myopathy. Some of these children, who present physically like Brooks with paralysis and vent-dependent breathing, are now able to walk and move on their own. Some have even re-gained the ability to breathe on their own without a ventilator. That is completely life-changing for these kids and their families. It is a modern day miracle!


We have faith that we can get this mission accomplished for SMARD. If we continue to work together like we have been, it's only a matter of time. We are hopeful gene therapy will be a reality in time to help Brooks, but we also know that either way, our fundraising efforts will save lives.


Although this is not the path we would've chosen for our family, we are grateful to take advantage of the opportunity to change lives.


It's a perfectly imperfect world with perfectly imperfect people. But when we come together, literally anything is possible. Onward.



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