The Charlie Cookson Foundation

Ryan's Strength

Our 7th CCF Family

Ryan Wilkinson – Our 7th CCF Family

Please meet our SEVENTH CCF FAMILY!!! We will financially support the parents of this amazing little boy, Ryan Wilkinson. Ryan is almost 4 years old and lives with his Mammy and Daddy in Carlisle. Ryan’s Mammy Debbie is his full time carer and his Daddy David is struggling to earn a wage as a Plasterer owed to the amount of unpaid leave he takes when his little boy is in hospital or at home but in need of extra care.

We are able to help this amazing family because of “You” our CCF Supporters, without you, we would not be able to relieve this family of their financial burdens for a period of 3 months! So walk tall, head high if you have bought a wristband, attended fundraising events or helped us in any way! Hold a special place in your heart for our CCF Families

I would like you all to know that I am writing this:- Charlie’s Mammy as myself and Chris felt such a close understanding with this family when we read their application, along with the other CCF Trustee’s we felt immediately that they needed our help. Myself and Chris know how hard it is to try and hold down a job whilst caring for a child 24/7, we had empathy with their around the clock care and the shift system they work between them so their amazing little boy is never without his Mammy or his Daddy, they never leave him.

Ryan was born on the 3rd of October 2010 weighing 2lb 8oz, three months early by emergency caesarean section due to being breach. He was taken to a special care unit, he was resuscitated twice then placed on a ventilator, as he was unable to breathe himself, he had to have a chest drain inserted due to a collapsed lung. He was transferred to the RVI in Newcastle where he was incubated and remained on a ventilator. He was receiving antibiotics as he has Oedema (Fluid retention in the body) an air bubble popped in his lungs, which caused his organs to be pushed to one side; he was on steroids to support his lungs. He was unable to take food orally for the first three months and was fed via tube through his nose then into his stomach.

In January 2011, he was transferred back to Carlisle hospital and then finally allowed home, but home did not stay home for very long, these parents have been through so much, they have had to deal with their beautiful little boy arresting several times at home resulting in his Daddy resuscitating him. This alone is every parent’s nightmare, but they live with this fear day in day out. They have spent most of his young life in hospital where various tests have led to the following results…however; Ryan is still to have an “official diagnosis”

Ryan is almost 4 years old and is on 24 hour oxygen owed to chronic lung disease, it would break any parents heart to associate any of these conditions with their child…Ryan also suffers from;

• Visible Peristalsis: – This is a radially symmetrical contraction and relaxation of muscles, which propagates in a wave down a muscular tube, in an anterograde fashion. It is often found in the contraction of smooth muscle tissue to propel food/chyme through a digestive tract, such as the human gastriontestinal tract.

• Recurrent Chest infection: – which is life threatening.

• Peg Fed: – Percutaneous Endoscopic Gastrostomy, a tube inserted into the stomach for feeding.

• Extra Pyramidal Movement Disorder, Bilateral Spasticity and Dyskinesia – Four limb: – involuntary muscle movements, stiffness, acuste dystonic reactions.

• Colonized Pseudomonas & Dysphagia :-Abstract Chronic Pulmonary Infection of the Lungs & poor swallow co-ordination with fear of aspiration.

• Stoma :- An opening, either natural or surgically created, which connects a portion of the body cavity to the outside environment.

• Deafness

Owed to Ryan’s complex health needs he spends a lot of time at the Great North Children’s Hospital (RVI) in Newcastle. He continues to undergo assessments he has recently just been discharged from an 8-week admission, which was very trying for both parents. With all of our applications, it is part of our filtering process to speak to medical professionals involved with the care of the poorly child, the Physiotherapist spoke of her admiration for both parents who give Ryan their all, they also spoke about how hard it is for one parent at a time to be able to cope with Ryan when he has his spasms, he is very hard to control, with your help his Mammy and Daddy can both be with their little boy as the financial strain is taken care of.

Ryan’s Daddy is the only wage earner and they rely on this income to meet all of their needs, the fact that Ryan has to stay in the RVI in packs on the time his Daddy gets to spend with his son and his wife. His Mammy stays with Ryan 24/7 “having a child in hospital places is an incredible strain on the household budget and any savings we have had are now all gone we have no financial cushion in case of an emergency, this is placing further strain on both myself and my husband. In addition to this we have the fear that David could become unemployed at any time this would result in our home becoming repossessed” Ryan’s Mammy.

All of this worry along with having to deal with the fact that their son has a life limiting condition is a living nightmare, but when they see his smile this worry drifts for a short while. This also places a great deal of strain on their relationship and ability to remain positive! “We worry about our own health as without us who will look after Ryan” (Ryan’s Mammy)

“A huge thank you to the Charlie Cookson Foundation, you have made an incredible difference to Ryan and to us as a family unit. Your help has allowed his Daddy to take the time off to be with his son knowing the bills are covered”

(Ryan’s Mammy Debbie)

This is why we do what we do!!! We cannot thank you all enough for your support, you are all giving this family some breathing space, some time together, some memories as a family, and this is so precious to parents of a child with a life limiting condition.

Big kisses to our Charlie (our Butterfly) who is showing us the way every day, we are so proud of you baby boy…we miss you beyond infinity….catch all of our butterfly kisses, love you so much xxxxxx