The Charlie Cookson Foundation

Ewan's battle

Our 14th CCF Family

Ewan Barry – Our 14th CCF Family

Our foundation is going from strength to strength, this is down to the amazing support from our supporters, our dedicated volunteers and hardworking Trustees who do so much in the background to keep moving us forward to enable us ‘to do what no other charity does’ When we look back at this time last year, we were looking for families, we knew were out there but did not know about us, now we have application forms submitted to us from all over the UK. All Trustees find this part very emotional and very difficult. We have a thorough filtering and assessing process involving medical professionals and social workers to ensure we choose the right family. A lot of the time these families are put in order of urgency, in the past we know we have made the right decisions, helping Kacie’s family before they put all of their efforts into fundraising for her amazing wheelchair, helping Connor’s family before the very sad and heart breaking passing of his Mother Julianne, helping Frankie’s family before he took flight with the angels…they all have a special timing.
Once again the perfect timing of helping our 14th family when they are at their lowest point, feeling that they have nowhere to turn. Please take a little time to read about another inspirational family;
Lisa Cowley and Decca Cowley are the parents of our February 2015 CCF family. This amazing family live in Jarrow, Tyne and Wear, their son Ewan Barry is 15 year old and has shown so much strength, throughout his journey of heartache and pain. He is the eldest of four children, he has braved this path he has been given with the love and support of his younger brothers, Myles 13, Aiden 10, sister Niamh 8 and his incredible parents. His story will touch the hearts of you all as it unfolds;
Ewan was born in the summer of 1999 at 38 weeks planned C Section, he was such a beautiful first born, who was hitting all the milestones until the age of 3 years old. This family has suffered (still suffering) a somewhat different heartache to the families that we have previously helped as they all knew something was not quite right from a very early age…Ewan’s mother Lisa, started to notice signs from the age of 3. Like any mother Lisa knew her little boy inside out, she just could not shift this awful feeling in her stomach that all was not well with him. When Ewan started nursery, Lisa began to notice that he was very clumsy he could not catch a ball, was falling over very frequently, and was also falling behind those in his class.
Lisa remembers all of this like it was yesterday, she voiced her concerns with their local GP to be told that ‘she was over reacting, Ewan is just lazy, he will catch up, don’t worry he will be ok by the age of 5 years old’
Lisa tried to continue as normal, but that feeling in her stomach would not go away, at the age of 6 years old the GP sent Ewan for Dyspraxia assessments, these assessments went on for almost 2 years. In the Summer of 2007, Lisa noticed that Ewan had a curve to his spine. A physiotherapist examined Ewan and within days he was admitted to the RVI in Newcastle, his blood cultures were grown and examined and within two weeks this family were given the devastating news that Ewan has the life limiting condition ‘Friedreich’s Ataxia’ The feeling in Lisa’a stomach was telling her something was not right, their lives had just fell apart with these two words…so many questions were running through Lisa’s mind, ‘Why us’ ‘How long have we got with him’ ‘How am I ever going to find the words to tell Ewan this’
Along with this aggressive disease, Ewan was also diagnosed with Left Vencular Hypertrophy (Heart Disease) and curvature of the spine. This disease:- Friedreich’s ataxia is an autosomal recessive disease, meaning individuals only develop symptoms if they inherit two copies of the defective FXN gene, one from their father and one from their mother. This rare inherited disease that causes nervous system damage and movement problems usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. The spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This damage results in awkward, unsteady movements and impaired sensory functions. The disorder also causes problems in the heart and spine, and some people with the condition develop diabetes.
Nothing prepared them for this news, Ewan went from a relatively healthy little boy to within three years being confined to a wheel chair, losing weight and became tired very easily. He was constantly being admitted to hospital with recurring chest infections, he was losing a lot of weight therefore a decision was made to insert a nasogastric tube, or NG tube that would carry food and medicine to the stomach through the nose. This was used for all feeding to give Ewan extra calories. Then in 2012 he underwent major spinal surgery as his organs were being crushed owed to the curvature of his spine. Ewan showed amazing strength through all of his procedures, bad days and the days he looked at his Mother’s face and no matter how she tried her best to put ‘the front’ on he would say ‘It’s going to be ok mam’
More bad news followed in 2013, they were told that Ewan was going blind, the optical nerves at the back of his eyes were failing, this family are feeling like they can take no more, but the heart breaking fact is that there will be more as this disease will get worse and the result is something they never ever want to think about.
Along this journey of despair Ewan’s siblings have been his rock they love him so very much. His brother Myles only a couple of years younger than Ewan is very close to his older brother, Lisa spoke of her worry of this heartache and effect this disease is having on their whole family. Myles does not want to get involved with the mischief most 13 years old do, he wants to stay with Ewan, his own personality has been supressed, he knows what is happening and what will happen, this a lot for a young mind to deal with, he has gone into his shell as he can’t bring himself to live his life as he sees his brother living with such torment.
Lisa and Decca are an amazing unit for this family, the strength they have every day to create as best they can a ‘normal’ life for them, whilst living under this huge dark cloud is incredible. As Ewan’s muscles stop working pulling his skeleton out of shape, he will face more surgery and more weakness as this disease takes hold.
Ewan is now fed through a tube into his stomach (Gastrostomy Tube) this is a medical device used to provide nutrition to patients who are unable to swallow safely, or need nutritional supplementation. He is also on breathing support at night, as his body is becoming tired and owed to his heart disease he has periods of when his breathing pauses, being attached to a ventilator and saturations monitor it is keeping his lungs filled to give him some energy to get through the next day.
Lisa is unable to work owed to the care Ewan needs, Lisa’s nights are very draining as Ewan’s is in a lot of pain and his heart works harder when his body is suffering which means machines being tweaked attending to her first born as a nurse and his mother. Then her mind switches on to be a mother to her other children who also need her. Lisa constantly feels torn, her babies are crying for her attention but her eldest needs her to keep him alive, Lisa and Decca are exhausted, Decca still works to bring in as much money as he can, but this has a huge impact on Lisa’s health, his work have agreed to give him extra time off as they understand his difficult family life however this is unpaid. So they days when Lisa physically cannot take the strains on her own, Decca is there but the bills don’t get paid.
Ewan is due to go back in to the RVI in Newcastle in April for more surgery, his feet are to be re shaped and put back in to shape, this will make their lives even more stressful the added worry of Ewan undergoing surgery, the separation of their family whilst Mam stays with Ewan, the additional costs, when Decca will have to take time off to take care of the children at home. This family have struggled like this for many years, and they are struggling financially to keep their home warm enough to keep Ewan free from colds and flu, they have had to increase loans to keep a roof above their head, these parents are very proud people, they would give anything to be able to have a full healthy family and go out to work to earn their living but this disease their amazing child is suffering from has taken this away from them and they have been ‘robbing Peter to Paul’ for a long time now. Not anymore….we will help them get back on their feet, just in time for Ewan’s surgery when their expenses will again escalate.
This family has a lot of love around them, the local people of South Shields, North Shields and Jarrow have raised enough money for them to enjoy a trip away to Euro Disney whilst Ewan still has his sight, make some amazing memories they will treasure and talk about in the years to come. Our Charlie brought the awareness to us of the financial difficulties parents face when they are in this situation. We lived in this downward spiral of nowhere to turn. It is our pleasure to be able to help these parents sleep a little better at night, the worry of can they afford the petrol, can they turn the heating on has gone. We are hoping they will enjoy their trip away even more as that black cloud will turn grey for a short while.
The disease Ewan suffers from is so aggressive, but they count everyday they have with him as a blessing. This young man is truly inspirational, he lives his life knowing what his future holds, he does have his moments of frustration and is angry with the world…anybody else would be the same. Life is very cruel and the screaming his parents do in silence also has a major impact on their health, then add to this the financial worry, keeping their family unit safe under one roof. They are so very strong and we feel blessed to be able to help them.
Ewan’s story like all the others was very hard to write, as I feel the pain of these parents, and can picture all of their daily/nightly battles. With Ewan’s though, it really brought home to me and to all of the Trustees that this can happen to anyone, this was such a blow to this family, does anybody really know if their gene’s are working correctly??? How would you deal with this?? A lot would crumble, I am in awe of their strength and courage to face each day…..thank you to everyone who has helped us relieve their financial stresses and strains…they have enough to worry about!

A Quote from Lisa, Ewan’s Mother;
Life is so hard and cruel …..but the help from all the amazing trustees … Helpers … Supporters … From ccf … I can now breath a sigh of relief and spend quality time with my treasured family …. Truely amazing charity and from parents that have been in the same situation as myself … I can’t thank you all enough xxx

Our clever little angel, thank you so much for whispering in the ears of these parents, we are so proud of you, keep flying high, you have an amazing young man to watch over from up there!

Well done to everyone who has helped make this happen, walk tall today you are all amazing!
Love from all of the CCF Trustees; Sarah, Helen, Chris, Dan, Chris, Andrew and all the fantastic Volunteers xxx