*Brenden’s Story*
GoFundMe: Bringing Brenden Home
Our son, Brenden Matthew, was born on April 1st, 2018 at 9am via emergency C-section. He was completely “floppy” and not breathing (with an Apgar score of 1). Brenden is our rainbow baby, conceived naturally after numerous failures with IVF (& more than $10,000 later). We prayed and prayed to be blessed with another baby and were given our amazing son. We made sure that we went to every single prenatal appointment and took every test available to ensure Brenden’s safety. I even gave up drinking caffeine!
However, Brenden was born 4 weeks early, and diagnosed 16 days later with a rare genetic disease that is not tested for and that can not be detected or treated in utero. Brenden has x-linked myotubular myopathy (xlmtm). It’s a condition that primarily affects muscles used for movement (skeletal muscles) and occurs almost exclusively in males. It is a rare disease that affects 1 in every 50,000 males. People with this condition have muscle weakness (myopathy) and decreased muscle tone (hypotonia) that are usually evident at birth. Many children do not survive birth or infancy and those that do…well, there’s a big spectrum…mild to severe…with most living their lives attached to ventilators, in wheelchairs, requiring life long care. However, some can be somewhat independent. It all depends on the level of care, lots of good luck and the child themselves. Additionally, this genetic disease does not affect brain development. So, essentially…Brenden’s thought processes and mental learning abilities are expected to normal. XLMTM affects his body, not his mind.
On top of this diagnosis, Brenden suddenly came down with an unexplained case of chylothorax, just 1 day after we were told about XLMTM. This means he had a leaky lymphatic system which caused double plueral effusions, a pericardic effusion and ascities. The doctors were concerned that they would not be able to cure it, as his case was so severe. He was in so much pain that one night, Fentanyl wasn’t even enough and he needed to be given Versed too! It was excruciating for us to see him in so much pain! However, the doctors did set up a plan to cure him…inserting 4 tubes in his body draining fluid (plus a Foley catheter and another tube pulling gases from his stomach…so a total of 6 tubes), holding all feedings for 2 weeks then changing his diet, and giving him a medicine called octreotide…& they were able to save our little boy!! THANK GOD!! After his upcoming surgeries…they hope to slowly reintroduce breast milk and watch closely that the chylothorax never returns!
Additionally, Brenden was born with a blood clot outside of his brain that is being treated with twice daily injections of blood thinners. There are also a few other minor (in comparison to everything else) issues. The doctors have said multiple times that there is no literature or any studies about any child like our son.
Back to the XLMTM…now that the chylothorax is basically cured…we are awaiting surgery to plan his next steps…a tracheostomy, gtube (feeding tube), and a recovery period in the NICU followed by a training period at a hospital/rehab facility (1 of 3 that are located at least 1 hour away from our home…Blythedale, St. Mary’s or Elizabeth-Seton…depending which has availability). We’re not sure how long that stay will be. Juliana has not met her little brother yet (although, they do FaceTime) and will only get to when he is transferred to the rehab facility.
When we found out the diagnosis of XLMTM, we immediately started to do research to find others like Brenden. Through reaching out on Facebook, and finding Alison Frase of the Joshua Frase Foundation and Anne Lennox of the Myotubular Trust…we were connected to families all over the globe that have children with this rare disease. These families have been so nice, open and candid about sharing their experiences. I know we will learn so much from these fierce warrior parents and their children!
Brenden has also been receiving the best care by the most amazing and brilliant doctors at Cornell. His neonatologists are incredible, as are the slew of other doctors he has met (neurology, hematology, genetics, respiratory, surgery, ENT, etc). Plus, he is so popular among the nurses and nurse practitioners! They all treat him with such love and care. It takes very special and strong people to work in a NICU and they are for sure, extremely wonderful and good hearted people.
Through it all…Brenden has fought hard and bravely…and is a happy, sweet and smart little boy that rarely complains. He is alert, moving more and more, and although he can not make any sound right now (due to being intubated) he can express himself and communicate with facial gestures. He is on cpap support through a vent tube, which is holding his airway open and he has difficulty swallowing secretions due to his low muscle tone. He is receiving PT and SLT, thanks to us fighting for it like crazy. He has shown a great deal of improvement, but he’s still not as strong as other babies his age. He will continue to improve, but to what point is unknown to all of us, except God and Brenden himself. His Daddy, Big sister and myself will be right by his side, advocating and loving him with all of our hearts…we are his biggest fans and we know that God has big plans for our little man! 💖
jesmogrego 
What can I say? Wow, you are an amazing Mom!!! I think you should be called Superwoman. I was just made aware of your family situation via Facebook so I decided to come here and read some of your blogs. I am just tired reading all that you do. God Bless you and your husband!! Your children are so incredibly blessed to have you as parents. I am going to share your story and I know plenty of friends who will be praying for all of you. Merry Christmas and a Happy Healthy New Year.
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