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Tyler James treatment fund

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This is Tyler James Hadley. He was born by emergency caesarean and had some difficulty breathing and had to be resuscitated.
On June 24th 2016 Tyler was finally breathing and considered a perfectly healthy little boy.
A few months past by and everything seemed normal because Tyler would smile, giggle and chit chat like any other baby would.

About 5 months or so passed and we started to get concerned by the fact that little Tyler was a bit floppy and lacked muscle tone.

In December 2016, the week before we were due to see a paediatrician Tyler had a choking incident so his mum(Lisa) took him to the hospital. Weight, blood pressure and many other tests were done to make sure Tyler was ok, they also did a chest x-ray and put a feeding tube down his nose. It turned out that Tyler was very ill. The doctor that was seeing us also checked him over with the floppiness that we were concerned about.

He told us that Tyler could have SMA type 1 which is spinal muscular atrophy and type 1 was the most severe type. We were given this news a couple of weeks short of xmas. The doctor suggested taking a blood sample to test for this condition. A couple of days after Christmas the results were back and we received the devastating news Tyler tested positive for the condition.
a couple of days into January we were getting good news we could go home. We were home for only 4 days before Tyler fell ill again his airways were blocked not helped by his condition (lack of muscle around his chest) Tyler was thankfully resusitated that day.
Tyler has since been ill and recovered well at Southampton hospital (specialists in Tyler's condition) we have been told he will need a ventilator to help him through the night. He also needs a cough machine to help him bring up secretions that get stuck in the back of his throat.

We have recently learnt there is a medicine that was approved in December 2016, however this medicine is only available to few babies in the UK as there are only 2 hospitals in the U.K. that are using this medicine.
When we were given the devastating news Tyler had SMA type 1 we were told the life expectancy of a child with this condition is considered to be very low. We were informed that most don't live past 2 years of age.
By the time Tyler would be able to get the medicine it would be too late. 
We have been told that they are using the medicine in countries such as Germany and France.
With this medicine Tyler could survive past 2 years old. He could lead a normal life in a wheelchair with this medicine which is the best we could hope for to see our little man grow up.

We need everybody's help no matter how big or small in getting Tyler over to France and Germany for this life changing medicine. We need to act fast as Tyler's muscles will start to deteriorate and his quality of life will be less.

As you have read,time is of the essence so please donate anything you can,no matter how big or small.I know Tyler's parents will be eternally grateful to everybody that donates.

Thank you very much in advance for taking the time to read Tyler's story and donating what you can.

Donations 

  • Nicola Salt
    • £10 
    • 6 yrs

Organizer

Simon Kimber
Organizer

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