Brayden’s story

Brayden was born on August 19, 2019. He was a beautiful, happy, smiley little guy. He loved to sleep and eat. He was an easy baby for sure.

The first 9 months of his life were straight forward, routine doctors’ appointments, all in all healthy, happy and thriving. At his 9 month checkup we went over milestone questions with his Pediatrician. It was noted that he was not hitting a lot of his major milestones. We were referred to a center here in Winnipeg, MB. There we met a Developmental Pediatrician as well as a Geneticist. Covid was just hitting the world at this time and everything was shut down. A lot of appointments were done on zoom. These 2 specialists diagnosed Brayden at that time with GDD (Global Developmental Delay) Hypotonia and noticed some Autistic traits. They suggested WES (Whole Exome Sequencing) testing (which needed board approval). In the meantime we set off on a medical journey like no other.

It started with Audiology, Physiotherapy and Occupational Therapy. Brayden worked so hard for everything he would accomplish. But he was determined. There was a point we remember wondering if Brayden would ever hold his head or sit unassisted… he did, if he would ever crawl… he did, or if he would talk and understand his own name… he did, and we definitely did not know if he would ever walk… he did!

From the age of 9 months to 2.5 years we were followed by a team of specialists. They consisted of but are not limited to the following… PT, OT, SLP, Aud, ENT, Respirology, Neurology, ONO testing, tonsil/adenoidectomy, Level 1 sleep study. We also applied and received an Inclusion Support Staff at daycare and a diagnosis of Autism so he could utilize a tutor from a local program as well.  We did have the WES Testing completed which confirmed the mutation in his NEXMIF gene which encompassed a lot of what we were seeing. Great, now we have a name for it.

Brayden was just starting to come into his own this past year (2022) He was starting to walk, talk more, he loved the winter and being on his sled, he loved all things Elmo and Cocomelon, being in water and anything that was cool to touch! He loved playing his harmonica and jamming out dancing with his cactus! Music was the way to his heart… His love for sleep and food continued throughout his life, the only time Brayden got angered is if you were taking too long with food! Brayden loved going to daycare, hanging with his Big Bro Braxton and working hard with my husband and I (it was really just a lot of playing to him).

On February 22, 2022 our beautiful son Brayden passed away tragically and unexpectedly. We still do not have a clear understanding of why but are committed to helping his XLID-98 family anyway that we can to help the other children with this diagnosis and to honour our son Brayden’s life. There is no doubt in our mind that Brayden would have achieved everything he set his mind to. We miss and love him dearly. We will continue to raise awareness around this condition.

‍Please note – it is not known at this time if there was anything medically that we were not aware of