Kai's appeal
Donation protected
This very happy little man is Kai. He is the strongest, bravest boy I know. No matter what he is going through he has a smile on his face.
Kai has Myhre Syndrome. This is an extremely rare stenosis degenerative life limiting disease. He is only 1 of 100 people worldwide who has this condition and 1 of only 5 boys.
He goes through so much each and every week. He has appointments within 3 different hospitals because of his various conditions, these include cardiology, respiratory, rheumatology, physiotherapy, geneticist, pediatrician speech therapy and many more.
He also has a very weak immune system. Because of this he needs to have infusions every 3 weeks. Without these infusions he wouldn't be able to cope with any illness including the common cold.
This year has been a hard year for him. His health isn't getting better. There has been a loss in his sight, his hearing and his mobility.
Still he walks around with a smile as big as the world.
One of his favourite thing in the world...... SNOW!!!
So..
On 10th August I am going to be doing a sky dive at 10,000ft. I am doing this to raise money to send this ray of sunshine to lapland where he will be able to have so much fun in the snow.
We are desperate to send him this year, we want him to be able to enjoy it without too many limitations.
Please please please help!!!
This little man goes through so much each and every week. Just want to do my part in helping him get a break from it all and just be a happy boy having the time of his life.
Kai has Myhre Syndrome. This is an extremely rare stenosis degenerative life limiting disease. He is only 1 of 100 people worldwide who has this condition and 1 of only 5 boys.
He goes through so much each and every week. He has appointments within 3 different hospitals because of his various conditions, these include cardiology, respiratory, rheumatology, physiotherapy, geneticist, pediatrician speech therapy and many more.
He also has a very weak immune system. Because of this he needs to have infusions every 3 weeks. Without these infusions he wouldn't be able to cope with any illness including the common cold.
This year has been a hard year for him. His health isn't getting better. There has been a loss in his sight, his hearing and his mobility.
Still he walks around with a smile as big as the world.
One of his favourite thing in the world...... SNOW!!!
So..
On 10th August I am going to be doing a sky dive at 10,000ft. I am doing this to raise money to send this ray of sunshine to lapland where he will be able to have so much fun in the snow.
We are desperate to send him this year, we want him to be able to enjoy it without too many limitations.
Please please please help!!!
This little man goes through so much each and every week. Just want to do my part in helping him get a break from it all and just be a happy boy having the time of his life.
Organizer
Mary-Jayne Lewis
Organizer
England
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