Words written on behalf of Mum (Shannon) & Dad (Adam) by Aunty Lisa (Fundraiser organiser)
Jude Arnhem Bell - Born 24th of July, 2020
Jude joined our family after 6.5 years of infertility, many miscarriages and heartache along the way - he was born a perfect, healthy, beautiful little baby.
The 21st of November, 2019 was the most exciting day, learning that a baby was finally joining our team. The pregnancy was a dream with no complications throughout, or at birth.
Jude exudes love and has such an angelic energy - a true old soul. He loves the bath, going for a drive in the car and his toy "Raffy". The love and excitement he has for his big brother, Xavier is so special to watch. They are two very different people, who we know will have a very special relationship.
At 2 weeks old Jude had his first admission to hospital for significant weight loss and was labelled as "failure to thrive". We thought we had lost him.
He was so unwell, for days it was touch and go! As the weeks went on, he never had much improvement despite our every effort to find a cause and changing so many things. At 5 weeks old Jude was rushed by ambulance to hospital for what was suspected to be seizures. He spent a week in hospital whilst the doctors decided what to do. He saw a neurologist at the Royal Children's Hospital who was sure they weren't seizures and sent us home with no real reason for these episodes - I remembered him asking if I was missing his sleeping cues and he looked as if he was just in REM sleep.
As the weeks progressed, no further weight gain from 7 weeks old and countless hospital admissions for various reasons... 2 weeks at the RCH for investigation into the cause of him not gaining weight, there was no real answers other than severe reflux.
4 days after leaving the RCH we were desperate for help as symptoms worsened and Jude's reflux was out of control. He was awake over 24 hours at a time. Irritable and just not his happy self. A dietitian and our GP decided to change his formula to a rice based one and increase the reflux medication. We couldn't believe the instant positive change! We had the happiest baby, he slept perfectly and was just thriving!
He started to look a little unwell 2 weeks ago and we had noticed that he wasn't having many wet nappies. He was also super uncomfortable when trying to urinate. Another trip to hospital where they told us he was fine and sent us home. He continued to have less output and was becoming more lethargic and less responsive with increased vomiting and now diarrhoea. We were finally admitted to hospital on the Tuesday last week, where the paediatrician felt that he was still "fine" but wanted to do some further neurological tests. On Wednesday he had a development assessment at the RCH to see how he was developing with his "failure to thrive". He was super happy, did lots of tummy time and proved just how strong he was - they had absolutely no concerns with him and his development.
Thursday he saw his new paediatrician. He was lethargic, unwell and his eyes were not fixing and he had obviously no control over them. The paediatrician sent us home and said we will see you next Tuesday for those tests.
Friday at 4.30am Jude was not himself, had not slept for a long period of time however was still demanding his feeds. Dad fed him and put him to bed. By 7am he was still not asleep so mum decided to pop him into the shower to hopefully help him relax and go to sleep.
At 7.45am Jude appeared to be struggling to breathe and was rushed to hospital by MICA paramedics and given CPR along the way.
That was the day our lives changed. Jude was placed into an induced coma and breathing support and transferred to the ICU at RCH. An MRI was done and showed lesions on the brain. With how quickly he had changed, the doctors were quite worried so a genetic test was conducted and we were told it would take 3 days for the results. In this time, Jude's became very unwell. His heart rate was dropping, he was put on breathing support, lost his eyesight and began to have frequent involuntary movements called "dystonia". We couldn't see our baby anymore, he looked so lifeless and sad.
Our days got worse and Jude's condition was deteriorating quickly.
Today he has woken and is able to see and appears to be much more himself and present. There is nothing more we want for him, than to be comfortable and happy.
Each day is a new day and we never know what it will bring. Some days Jude is awake, alert and happy, then within a day his heart rate drops and he needs breathing support and sedation.
Jude is staying strong and fighting as hard as he can to stay with us! However, we have no idea how long we have left with our beautiful miracle baby.
On Friday, 20th November the results came back for the genetic testing. It had been suspected that he had a rare, incurable, degenerative mitochondria syndrome - Leigh's Disease/Syndrome.
What the results found was this was not the case - in fact, it showed that Jude had a completely new gene that has never been detected in any human before. This means we technically have no answer as to what this means for Jude, his life expectancy, recovery or even if there is possible treatment - but this also means that there is hope! The doctors believe it could still be a degenerative disorder, but without studies on this gene, no one can say what might happen.
Xavier is Jude's big brother - he is 11 years old. Xavier was so excited to learn he had a baby brother on the way and was so excited to teach him how to play footy and to watch the Western Bulldogs play!
Xavier has not been able to see his darling baby brother, due to COVID safe visiting restrictions since being admitted to hospital.
This situation would be difficult for anyone to go through, but especially a child who does not fully understand what is happening or why.
We are asking for any support you can offer to help us be able to spend every moment left as a family of 4, as amazingly and comfortable as possible.
Your generous support will mean that we can face what undetermined challenges lay ahead for Jude, and to be able to provide Xavier with every support he will need, as well as ourselves. The team at RCH have suggested that we move close to a hospital to ensure that Jude is as close as possible to emergency care in case he deteriorates further.
As you can imagine, this current time and the future will be difficult with the uncertainty, and we have been advised that the best way forward is to take each day as it comes.
This pain and story is far from over, and sadly it is still a reality that Jude could be called to the heavens sooner then any parent can prepare for.
This is the hardest thing for any parent or child to have to endure.
- Dan Heeney
- David and Mavis Seymour
- Daryle and Rebecca SMITH
- Morgan Stone
- Scott Raffle