Ayden

Aydens journey into the world started early when he entered the world 4 weeks premature. He was on the smaller size but he was healthy and as a family we were beyond blessed to have another baby to add to our growing family.

However , when Ayden was about 10 weeks old I found that he had some blood in his urine and like any other parent I rushed up to my local A & E.

Things Took a turn for the worse in that the hospital kept him in and his colouring began to change, and needed assistance breathing.

The hospital had no answers as to what was happening to Ayden , so at 15 weeks old they found a placement in the intensive care unit in great ormond street children’s hospital.

He was transported by a specialist ambulance in terms of equipment and staffing due to delicate health.

Great ormond street intensive care have done a spectacular job in providing around the clock care. Due to the nerve issues his muscles have become weak, Ayden is on a ventilator to assist his breathing as the muscle around his lungs are not strong enough to push out the carbon dioxide , he has a feeding tube for his milk, he has a week cry and generally his motor skills are a lot more delayed then that of an average 3+ month old.

Then the nightmare truly began the start of our heartbreak. Doctors sent of for a genetics test to see if he was suffering from any genetic disorders and it came back with the diagnosis of SMARD1, which is an extremely rare condition.

https://smauk.org.uk/support-information/rarer-forms-of-sma/smard1/#:~:text=What%20is%20SMARD1%3F,children%20affected%20is%20very%20small.

Definition :

SMARD1 is an inherited nervous system condition that causes muscle weakness and respiratory failure, usually beginning between the ages of 6 weeks and 6 months. SMARD1 is an extremely rare disease; the number of children affected is very small. Currently, it is not possible to collect accurate numbers of those affected but this may change as knowledge of the condition increases.

Doctors have now said multiple times that there is nothing that they can do for our sweet boy and that we should switch his ventilators off, but as parents how can we do this? How can we withdraw our son his fighting chance to live.

We have reached out to clinical trials in America and they can also not help due to these trials being at the research stage.

We are raising money to do everything possible to give our son a fighting chance and to donate towards more research for this disease to not only help our son but to help other families facing this heartbreaking disease.

***UPDATE JULY 2024*** Hello All, This handsome little man is Ayden and he is currently in intensive care at a London hospital . They want to end his life by withdrawing care. Sadly we are now at the stage where the hospital has made the decision to submit a court application to withdraw Aydens life support. However, there is treatment available that will save Ayden's life. Which is to have a tracheostomy for the use of mechanical ventilation to assist breathing. A tracheostomy is standard practice for patients with SMARD1. SMARD1 is an extremely rare condition , due to this the UK have little experience but other countries are advanced with multiple success stories. The hospital have refused this treatment. Ayden is nearly a year old and has been in hospital since November 2023. We just want our boy to not only get the treatment he deserves ,but the treatment he has a human right to! He is alert, conscious, responsive and happy. Please see videos of our smiling boy Please help by sharing Aydens story far and wide ! He deserves to live, he deserves to love and deserves to be with his family. His disability should not mean a death sentence Please read about Aydens story here , where any funds donated will be used for medical & legal costs

Please support in any way you can and please share as far and as wide as possible!