Hiya,

My name is Jade and I have created this page for my son Toby.

He is nearly 3 and is the bravest, most resilient little soul I know.

He was born in 2022 with Charge Syndrome.

Charge syndrome is a rare genetic disorder affecting many parts of the body and causing a range of birth defects.

Toby is greatly affected by charge syndrome and has been in and out of hospital most of his life including a 4 month stay in picu in 2024 where we nearly lost him after open heart surgery and many complications.

He spent 3 months in the nicu and then between March 2023 and September 2024 he was in and out of hospital relentlessly for weeks on end.

These illnesses caused Toby to be quite delayed with his mobility as he was constantly on his back poorly.

Our day to day routine consists of regular and routine invasive medical care to protect his airway, lungs, heart and kidneys and physiotherapy to get our little boy moving and to keep him out of hospital.

Toby has profound deafness in both ears, visually impaired with high risk of his retina detachment, unsafe swallow and is tube fed, chronic lung disease so requires 24/7 oxygen and overnight ventilation, kidney disease, cardiac problems, facial paralysis, unsafe airway, poor growth, cerebral palsy, amongst a whole list of medical issues that he deals with day to day.

Our aim is to provide Toby with private physiotherapy to get him moving and give him the best quality of life possible.

Weve seen how being active has greatly improved Tobys quality of life. His lungs are stronger and moving around means he is able to move mucus and secretions himself without invasive treatment.

Toby is unable to walk or stand independently and we are hoping more physio input will make this happen.

As you can imagine the NHS is stretched so he receives minimal support and we are trying to fill in the gaps with private physio sessions.

We have tried funding this ourselves but we are finding it increasingly difficult as Tobys long stays in hospital over the last 2.5 years have meant that we have used all of our savings on parking fees, food and just trying to survive in hospital when he has been so poorly.

We are greatful to anyone who can help and we know times are increasingly tough right now..but if you can't and you have read this far...thankyou so much for reading ❤️

If you want to see more of our little superhero

Instagram. charge.along.with.toby