Axels Medical Fund & Stem Cell Trip

'The Journey of Axel - the boy next door with blue eyes, blonde hair and the worlds most gentle soul'


Hello to All,

Lesley & Ryan here, the proud parents of Ryley, Axel & Ajay.

My husband is Sydney born & bred, and I am originally from the United States but have been lucky enough to call Sydney home for the better part of 12years .


Our life took a huge turn on 6th September, 2013.
Expecting our first child (twins actually!) and experiencing a healthy & normal pregnancy, I went in to early labour at 24weeks, and gave birth to twin boys Ryley & Axel at 26weeks gestation after 5 days of labour.

Whilst Ryley overcome most of his challenges, Axel has not been so lucky and has battled since his amazing arrival. 



Axels rough timeline goes like this: 
- heart surgery at 10days old
- total breathing support due to contracting sepsis
on two sepearte occasions
- laser eye corrective surgery at 10wks old to fix retinotopy of prematurity
- his first ever visit home from NICU occurred at 4months old
- Required full oxygen support at home for 6months after contracting bronchiolitis
- 14months old developed seizures, and is diagnosed as Epileptic, requiring daily medications to control breakthrough & surprise seizures (The common cold will bring Axel to his knees requiring Emergency care and heavy sedation due to onset of a seizure)
- 12months old diagnosed with Cerebral Palsy & Global Developmental Delay 
- 18months old surgery for Hypospadias which is relocation of uretha and urinary tract


Up until this point, we have been given only good news on Axels recovery and chances of a normal life- as most of his issue's can be overcome or improved. We have always hoped that he would mostly 'catch up' to a decent degree like his twin Ryley. 

Sadly, on Wednesday 22nd March 2017 the stark reality of Axel's issues came crashing home to our tight-knit family.

At approx 43months old, Axel is diagnosed with Mowat Wilson Syndrome, an extremely rare genetic condition with roughly only 300 known cases worldwide. It causes severe physical & intellectual disability. 


Difficulties Axel faces with this syndrome-
* may never speak
* Approx life expectancy is recorded at 30yrs age (although some cases have be known to live past the age of 60)
* will never live independently
* future mobility such as walking or running etc is an unknown (at present he currently requires assistance with a walking frame)
* Generally speaking, Axel will require 24hr care as even the most basic life skill of feeding himself is a challenge.

To be given the news that your child will potentially leave this world before you is something that no parent should have to endure. His joy may not always be on show, but when he decides to share a smile or a giggle the world is a far better place, because pure happiness and delight is shining brightly.

Whilst we are broken by the news, we continue to fight alongside Axel, making sure 'every' day is lived to its fullest. 


To date there is no cure for Mowat / Wilson Syndrome.

Recommended treatments include - weekly Physio, Occupational, Speech & Visual therapies.

Stem-cell therapy is also an option & can help treat symptoms like Global Developmental Delay & Epilepsy, and improve cognitive abilities and fine/gross motor skills. 

Due to life expectancy complications surrounding Mowat Wilson Syndrome, we wish to use the funds as soon as possible to help Axel reach a full and as close to self dependant life as possible

We are desperately trying to raise funds, so please help us whether by spreading the word of Axel and his journey, maybe a sponsored school or business event, or simply a personal donation, all of which will go towards medical equipment, medications, possible disability motor vehicle, even routine purchases such as a special needs bed... and hopefully in the near future stem-cell therapy (which would require relocation overseas for 2/3months whilst he undergoes treatment). 

Whilst there are urgencies & sufferings all over the world, for Axel early intervention is vital in helping him to achieve his best possible self. 


We appreciate your time, and thank you dearly for any help you can offer our little battler.









Find us https://www.facebook.com/axeljourney/

https://www.instagram.com/toddlerlife123/ 

Lesley, Ryan, Ryley, Axel & baby bro Ajay xxx