In March 1999 we had our first child. All throughout the pregnancy friends asked us – what do you want a boy or girl? We said we just want a healthy baby. We had no known history of any genetic diseases in our family so were pretty confident that our baby would be healthy. However, Trent wasnt, he was born blue. We were petrified. He spent 6 weeks in PICU and the doctors couldn’t diagnose him. No muscle biopsy was done as they were not thinking it was genetic.
By the time Trent came home from hospital I was pregnant with Zac. I was petrified. Trent had major complications he was extremely hypotonic however could feed from a bottle (very slowly) and breathe on his own with lots of suctioning.
In March 2000 Zac was born and the doctors had told us that Trent’s complications were due to trauma at birth so with a scheduled c section everything would be ok. But it wasn’t, Zac came out blue and floppy. Our pediatrician was standing beside me and said “oh we missed something”. We were devastated. We didn’t know how we could possibly look after 2 babies under 1 year old with this disability.
Finally, when Zac was 6months and Trent 18 months they did a muscle biopsy and MTMX was diagnosed. We remember the geneticist saying to us “don’t get too attached you are lucky they have lived this long”. We were fuming about her saying “don’t get too attached”, how could she say that? We vowed to fight for our beautiful boys from that day forward. Yes it has been a struggle both boys spent most winters in hospital with all doctors righting them off. However, they pulled through. They both walked talked and fed independently. We worked tirelessly on doing physio , speech and OT on them several times a day. In return they gave us soooooooooo much love.
In October 2004 , when Trent was five years old he got back to back RSV. He spent 6 weeks in ICU and again proved the doctors wrong and came home. After spending a week at home his body gave up and he passed away. We were devastated, especially for Zaci as his brother his mentor his best friend was gone. Zac was only 4 years old and was so confused. Not only did he have enormous grief he was scared of his own mortality.
Zac is now 9 years old. He is our little fighter. Although not so small now !! He is 150cm tall. He has just gone into a powerchair, but he can mobilize short distances. He can eat and breathe on his own. He has the biggest heart. He attends a mainstream school and does really well academically.
The journey we are on is hard financially and emotionally. Every day we look at him in the morning and see if today is going to be a good day. But both our beautiful boys have given us so much love. We have also met the most amazing people also riding this roller coaster of a life. We wouldn’t change anything.