Menkes Australia

  • Increase font size
  • Default font size
  • Decrease font size
Home Menkes Stories Hayden's Story

Hayden's Story

E-mail Print PDF


Hayden Charles Wright

Passed away on Monday, 8 April 2013

4 years old

Sweet is the sleep that ends all pain




My beautiful angel entered the world on the afternoon of 19th November 2008 at 4.31pm.

Hayden was a beautiful blissful pregnancy and a dream to bring into the world. He was happy and healthy and glowing with so much love that you did and still do look like a little angel send from above. So many people commented on how angelic you looked and I had to agree.

The first 6months of your life you were developing and growing and doing all the things that a healthy happy boy should. Your older brother Jake was so curious of this little boy. All I could imagine was the both of you fighting or rolling around together in the backyard.

Hayden only rolled over once and soon began to lose his ability to suck from a bottle. Hayden would cry day in and day out for 3-4 months straight, we thought it must be teething or growing pains. Neither John nor I thought it would be irritability caused from infantile spasms.

Hayden 5 months old

Hayden wasn’t going into deep sleep due to these infantile spasms, he was sooooo tried. Hayden lost control of his head and wasn’t able to hold it up from around the 6 month mark. We started physiotherapy everyday with him and completed kinesiology to help my baby back to where he was when he was born.


How quickly our lives turned on the 8th October 2009. The day you were diagnosed with an extremely rare terminal disease we have never heard of. After 10 days in hospital for what was first believed to be epilepsy soon turned into something more out of this world. That afternoon a part of me died, the words ringing over and over in my head - MENKES……

Unfortunately it wasn’t until Hayden was almost 11 months old the age of diagnosis that we realised Hayden wouldn’t be the same as when he was born. He was now even more special and unique in his own way.

Hayden is now loved, cuddled and cared for more than he’ll ever know. He has taught me a thing or two about myself, and people.

He truly is that angel send from above to teach me and the world of Menkes. We now take one day at a time and enjoy Hayden for today.

Last Updated on Monday, 20 May 2013 02:47