2 years old | Treacher Collins Syndrome | Estimated Funds Needed: $55,000


Zackary Jacob is our 5th Child, He was a big surprise and a roller coaster pregnancy.

From 12 weeks pregnant we were told there was something wrong, I had tests done, an amniocentesis, MRI scans, Genetic blood testing all of which came back clear. All the doctors could tell us was that he had a little lower jaw, “Oh well a small chin, I am sure he will be super adorable.”

Through the tests we found out he was a Boy! Our other son was over the moon as were his three older sisters. Two weeks before he was due to be born I had a general check up and was found to have far too much amniotic fluid Zackary couldn’t swallow in my belly due to his small jaw, so the fluid had not been regulated as it should and built up. The Drs did another Ultrasound and then the world around us came crashing down…..

We were told…. ” I am sorry your son has something called Treacher Collins Syndrome – we think”  They weren’t completely sure. But they continued on to tell us “I am sorry your son has no ears, he has a severely small lower jaw, he has a cleft palate, he has missing cheek bones, a cleft in his nose and his eyes slant downwards. If he lives through birth he will have significant hearing loss, sight problems, feeding and breathing issues and may need a tracheostomy and feeding tubes.

“If he does make it through birth you can expect for him to be in hospital for sometime” The Doctor’s said.

I get tears thinking about the moment my baby was born. I was in shock by what the doctors said about his future, and I became defensive and so very protective of him. But no matter what I was told, I had faith that he would be okay. And he will.

Zackary was born via Operation on Parental support, it was the first time in our state that this type of birth had been attempted, the birth itself was a risk let alone Zackary surviving. I was confidently calm the morning of his birth, I don’t know why Mother’s intuition is a powerful thing.

Zackary was born breathing!!! His airway wasn’t great but he didn’t need to be trached at birth he was incubated but only for precautions. He was perfect! I was surprised in myself I didn’t see his differences not a tiny bit- not at all!

The hard road had just started but I had strength!  I made a promise to him and myself the moment i woke up and first saw him – that i would do everything i ever could to give him the best possible chance , the best of anything he ever needed and to have him live a life as normal as possible.

Zack is now 2 years old.. Mentally fine, he is super cheeky, adorable, mischievous and very determined. He is like any other 2 year old little boy. He rules the house and has us all wrapped around his little finger.

The past two years:

  • Zack has been under anesthetics 6 or maybe more times
  • He stayed in hospital for 5 months following his birth
  • He has had a Nasal Pharyngeal Tube, Tried CPAP, Nasal Gastric tube
  • He had the tracheostomy done at 3.5 months old
  • He had a PEG feeding tube placed
  • Many Doctor, Specialist, Physio-therapy and Speech appointments

In less than a years time the Cranio Facial Doctors have decided Zackary will have a Jaw distraction done. He will also need many other reconstruction surgeries to fix his cheek bones and cleft palate. The jaw distraction may need to be done multiple times as he grows. The distractors will help bring his small lower jaw forward – hopefully enough to be able to remove the Tracheostomy breathing tube in hope to have him breathing, feeding and trying to talk by himself. Distractors will be placed , the back of his jaw will be broken and turning of the distractors everyday over many weeks is what we are faced with.

While the surgeries are normally covered, our accommodation to be near the hospital for that length of time is not. Zackary has on going monthly medical supply bills, feeding supplies, hire of equiptment and we are saving towards his future surgeries and anything he needs in the mean time.

Zackary is a candidate for having his ear canals opened and having ears created through an amazing procedure currently done in the United States – we live in Australia. The surgery and all costs involved will not be covered, we will be relying heavily on fundraising to make is a possibility for Zack.

If we are able to do this it would mean close to perfect normal hearing for him. When people stop and notice Zackary the first thing that is asked is “Why doesn’t he have ears?” Young children are always asking where his ears are.

He has Grade 4 Microtia on the outside but luckily he still has the canal inside.

He is so special – A determined little fighter, he has an amazingly strong will to be just like everyone else, he can sign but he would rather try to talk, he is a social butterfly and loves people and being involved. He is yet to experience bullying or negativity about the way he looks and we want to try to keep him being confident, outgoing and happy all the way through out his life.

Sarah – Zackary’s Mother xxx

October 2014