#LetsGoLanden

Feb 5th 2022 at 3:27PM our family was blessed with the birth of Landen Nash Bertocchi. Life as we knew it quickly transformed as shortly after birth he was transferred to LOYOLA NICU via ambulance for respiratory treatment and feeding tube placement as complications of Spinal Muscular Atrophy. After a long 2 week wait for the results of genetic testing, Landen was diagnosed with SMA type 0. Type 0 is the most rare and aggressive form of Spinal Muscular Atrophy to where there is no cure; only treatments to prolong life and halt progression of this horrible disease. The only treatments for SMA currently are gene therapy, to which you have to be a candidate based on how many copies of a specific gene he has. Gene therapy was not an optimal option for Landen as it would not improve his quality of life, which lead Nicki, Ryan and Landen on the path they are today—which is palliative care. The prognosis of SMA type 0 is a shortened life span ( days, weeks or months ), therefore, every single moment Landen is here with us should be spent surrounded by his mother and father within the comfort of their own home that is filled with so much love. To start on this journey of getting Landen home he will have to get two surgeries done, a tracheotomy and a gastrostomy feeding tube insertion. A tracheotomy is a surgical procedure which consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision into the trachea. The gastrostomy is a feeding tube directly into the stomach so Landen will no longer require tubes in his nose and throat which will make it easier for Nicki and Ryan to hold him but also help his comfort levels. There is so much unknown with this genetic disease that we are uncertain of Landen’s future or how much time this sweet angel has left here on this earth.

I have created this GoFundMe on behalf of my brother and sister-in-law for a few reasons that I would like to explain:

To say Ryan and Nicki are two of the strongest people on this earth, would be an understatement. No one could imagine how quickly life changed overnight due to a rare genetic disease that we were unaware ran in both our families. For a child to have SMA, both parents must be carriers of the gene mutation, and even then, there is a 1 in 4 chance that your child will be affected. SMA affects 1 in every 11,000 births and approximately 1 in 50 people carry one non-working gene for SMA and do not have symptoms. Landen is blessed to have two parents who have endlessly advocated for top-tier care and life-saving treatments for him every second of everyday he has been alive. Nothing will stop these two-- so anything that us as a family member, friend, co-worker, acquaintance, etc. can do to ease the financial burden of anything to come their way as they navigate the waters of this disease would be appreciated. So many people who know Ryan and Nicki have already shown them love with gift cards, words of encouragement, text messages, phone calls, prayers, cards, you name it, and on behalf of Ryan and Nicki want to express a genuine heartfelt- THANK YOU. There isn’t possibly enough time to individually thank each person as every waking moment is spent driving to/from Loyola and time spent with baby Landen in the NICU.

Another reason for starting this GoFundMe is for spreading awareness on Spinal Muscular Atrophy itself. The goal is to prevent another child being affected by this disease by providing anyone we know with the knowledge of SMA.

You can learn more here: CureSMA.com