Give William a Chance !

Hi, my name Is Jessica, and I am a mother to an incredible little warrior named William. William is an energetic little 3-year-old who has a ‘never give up’ attitude. Everyone who knows William knows his love for Pretzels, Peter Rabbit, Jumping, water play & who can forget Rita Ora’s Music.

It hasn’t been an easy journey through life for William, but his will to live and experience the world is bigger than life itself.

I have created this go fund me page in hopes to raise enough money to cover medical and travel costs to the USA for Dr Timothy Kane the Chief of General & Thoracic Surgery at Children’s National Hospital Washington DC to perform a POEM (Per-oral Endoscopic Myotomy) On my now 3-year-old with Type 3 Achalasia. In hopes our son will one day eat and live without pain and enjoy all the things we take for granted.

What if I told you that the boy you see in the photos, relies on a Cardiac Pacemaker to ensure his heart is beating enough to pump blood through his body.

What if I told you he has a feeding tube to ensure his body is receiving enough nutrient that every child requires to thrive.

What if I told you every single day, he is faced with severe chest pain that mimic that of a heart attack, severe enough to even wake you from sleep.

What if I told you every day William wants to eat and drink. His parents knowing, he will regurgitate, struggle to breathe, vomit, and in some serious cases become unresponsive, hearts break every time they have to say no, or that’s enough.

What if I told you, William also has non-verbal Autism, and cannot tell anyone how he is feeling. His little petrified face not understanding why he can’t have certain things and just wanting his mother to protect him when these symptoms occur.

This is Our Sons reality. Knowing we have exhausted all avenues in Australia, we have had to accept the fact that there is no surgical team equipped or willing to perform the Surgery that William needs.

What Is Achalasia

Achalasia is a rare motility disorder that affects a person’s ability to empty their oesophagus, or in other words, their ability to swallow. This disability occurs when the lower end of the oesophagus — called the lower oesophageal sphincter (LES) — fails to open to let food through into the stomach.

Type 3 achalasia defines achalasia with spasms that result in sudden, abnormal squeezing of the oesophagus and the (LES). This type of achalasia is the most severe and can also elicit the most severe symptoms, such as severe chest pains that may mimic those of a heart attack, and spasms severe enough to wake you from sleep.

Achalasia Affects 1 in 100,000 Adults aged 25 – 60. Less than 10% of cases will be children under 18 years old. It is extremely uncommon and unheard of having a child born with Type 3. There is currently no statistical data that is available to share, that captures its occurrence in the world for someone of Williams age. This condition is very complex and impacts life at a fundamental level, but simply put William’s oesophagus isn’t able to move food or even his own saliva through to his stomach.

Williams Achalasia Journey

Williams Health journey started in utero where he was seen to have an abnormal heart rate which at 5 months old needed a pacemaker. Now this played a big part of his journey as most heart kids have difficulty feeding and require a short-term feeding tube. When William would struggle to breast feed and milk started to come out through his nose and mouth, to the point he would gurgle choke and turn blue, having the doctors suggest a short term nasogastric feeding tube wasn’t uncommon. After countless admissions into hospital, we were told these episodes are reflux and seen by countless medical professionals to ‘try this try that’, start this medication etc. etc. this will get better with time.

At 11 months old we had enough, and I had called ‘Ryan’s Rule’ as the doctors were now suspecting a motility issue/potential obstruction they had now gotten the surgeons involved and they advised there is a test they are able to perform in Adelaide, South Australia, to confirm the diagnosis.

This test now confirmed, Type 3 Achalasia. Our Director of Gastro advised there is nothing proven to work and would advise against a Procedure called a Heller Myotomy, a procedure that cuts the external wall of the oesophagus from the outside.

We still proceeded with the surgical appointment to which the surgeon advised he has not done this procedure in a child under 10, however this is such a rare condition that not many (if any) surgeons would have experience & that ‘not doing surgery is not an option’ within 2 months Williams was Post Operation in PICU (Paediatric Intensive Care Unit) recovering from – Hellers Myotomy with partial Fundoplication, relocation of Cardiac Pacemaker from left abdomen to right, surgically inserted gastrostomy. Unfortunately, even after the recovery stage William still had symptoms and was unable to eat orally and still requiring full nutrition through a feeding tube. Further tests showed he still had a lot of pressure, and the surgery was unsuccessful.

We agreed to further fortnightly dilatations under General Aesthetic where they inflate a balloon to stretch his oesophagus, which did not see William have any long-term relief. However, this is all that was available to him. After researching more and more, we found Dilatations cause more problems long term and found out about the POEM procedure and the success they are having in adults and children around the world. This is an endoscopic procedure that can make a longer cut in the internal lining of the oesophagus.

We had then reached out to a World-renowned Surgeon who specialises in looking after children all around the world with this condition. As a parent being told there is no options, to a surgeon in Washington, advising he performed this procedure on a 2-year-old with the same condition who is now completely eating orally with no symptoms, just gives us so much hope.

Imagine being a child with non-verbal autism, feeling constant chest pain wanting to eat so badly but you knowing you’re going to choke and struggle to breathe and not even be able to tell your own parents how much pain you are in or point to wear it hurts.

I was told I can’t change the hand he was dealt, but to know he choose us to fight for him. This is a serious life-threatening condition that continues to cause our son so much agony.

We thank you so much for caring to read about our son’s journey, any financial support, prayers, or awareness raised, will not be taken for granted, please help us give William a chance to live a life without pain.