Nemaline Myopathy Support Group


Justin Lindsay Hills (B: 18 December 2003))

New Zealand

Hello world! I'm finally home from hospital.We are sure a lot of you will be able to relate to Justin's story and we also hope that the little things we have told will maybe help in the future.

Justin was delivered by C-section at 40 weeks; at first glances he appeared to be a healthy little boy. Then it came time for his first feed, he wouldn't suckle and the bottle was unsuccessful too. That's when he was taken to S.C.B.U and was feed via a nasal gastric tube. He was the biggest baby there by far, other mothers would look at him and wonder why he was there, and after all he didn't look starved. We were however able to sneak him out for a couple hours to be part of his first family Christmas. Then back to the hospital where he was released at 10 days old after taking small amounts of formula. Once home, bottle feeding was a problem, as the mls began to slip so did Justin, he was what we refer to as "Lights on no-one home", partly due to what we found out much later was an uncoordinated swallow, which meant he was aspirating into his lungs, as you could imagine this was quite traumatic for everyone. There were many trips back and forth from the hospital, initially we were told he had thrush in his mouth, but the cream that was supposed to solve this seemed to make him worse, the next diagnosis was that he was dehydrated (I still feel that they just thought we were just bad parents). The weeks went by like marathons until we saw an ear, nose and throat surgeon who put in a nasal gastric tube, to our relief Justin was able to get the nutrition he needed. For the next few months Justin under went numerous tests and from all the little things they found out they informed us that it was Reflux (I still don't think it was, but what does a mother know really??).

This is my dad TrevorThis period of Justin's life was mainly taken up by so-called Reflux and confusion, none of the doctors or specialists could answer any of our questions regarding Justin's condition. He was losing weight not gaining it and feeding got worse not better. It was also around the time that we noticed just how behind our little boy was becoming with regard to his movement and growth. You would see other parents with their 6 month olds and just stare in shock that they were reaching milestones that you could not even begin to see early signs of. During these months we tried to get Justin to eat solids, we had some success followed by more disappointment; He loves food (especially biscuits, ginger kisses, chippies and chocolate. Pretty much things that dissolve in his mouth) but it just wouldn't stay down for long.

And Karen my mum.Bath time was always his favourite time of day, he would stay in there as long as you would let him, soon after being taken out of the bath, his nightly routine of playing with daddy before being put to bed begun. Once in bed more problems became apparent, no matter which way we would lay him down Justin always ended up on his back with his mouth wide open his eyes the same, which led to us having to prop him up on pillows at night to help him breathe easier.

Christmas 2005When Justin's first birthday rolled round, he was on fire!! So happy and full of life. Funs and games was what he was all about. He would watch the Wiggles during the day (all day if you would let him) then his sister would come home from school and then it was all about her, Justin would light up just at the sight of Sarah. They have an amazing bond and even now miss each other when they are separated for more than a day. Even though he was such a happy little pork chop, this year was also the hardest medically, we still did not have a diagnosis for his condition, the doctors were making guesses ranging from MD to SMA.

Here I am with my sister Sarah and Auntie Amanda.

Working my Occupational Therapist Ali.Justin became reliant on his nasal gastric tube for all feeding. Winter was plagued with constant chest infections and pneumonia. We counted the days Justin was off antibiotics rather than on.
As he was older his physical therapy became more intense, we were given a standing frame to teach him to stand and straighten his posture (which of course he hated with vengeance), he would be 'massaged' by physiotherapists weekly to help with coughing which he was unable to do by himself. However the exercises mum would do with him everyday paid off. During the year he had been able to roll over unaided and somehow had managed to teach himself to shuffle on his bum, finally giving him the burst of independence he was craving. This however would stop and start as his health would permit.
18 months old.In July 05 Justin would undergo surgery to have a P.E.G put in as his nasal gastric tube was only ever meant to be temporary. Shortly after recovering from this op (about a month) Justin would go to another hospital to have a muscle biopsy preformed. And then the long wait… approx 6 months until we would have the results.

First bike ride with mumIn February 2006 we finally got the results back from Justin's muscle biopsy, and his condition now had a name 'Nemaline myopathy' (Typical). The relief we felt in having an answer and especially since SMA was ruled out was amazing.
A month later the family moved to Hamilton for Trevor's job, which also meant moving closer to a bigger hospital and more organisations for kids with needs.
The turning point since moving to Hamilton was when Karen searched for such an organisation and found a Hungarian run programme for kids with Cerebral palsy 'conductive education' or school as we like to call it. School has given Justin's body a meaning. He is able to crawl a small way (however he still can't hold his head up), he is able to stand supported and has a walking frame which he can manoeuvre on his own. Justin's arms are still the strongest part of his body and they carry much of his weight.
My first wheelchair

Ain't I the Cool Dude!Whilst at home however he still prefers to bum shuffle as it's much faster for him when he is trying to keep up with Sarah.
Medically this year has been the quietest, chest infections are less frequent and his only surgery was to remove his tonsils (which fell out due to rot), and install grommets in his ears. This was to aid in his breathing with particular attention to when he sleeps. However this is not the case as Justin's sleep patterns have not changed and we are currently chasing all possible medical avenues to get a sleep study done on him (the waiting time in NZ is 1 year due to lack of specialists). He is an amazing little boy, funny, determined and most of all happy.
His smile and laugh bring so much happiness to all those around him, even though most of the time he is just being cheeky!! (We are sometimes glad that he is not yet able to speak as even without a voice his message is very clear.) Justin turned 3 recently and we will continue to add to his timeline as the years go on.

Justin's 4th birthday

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
Learn more »»