**OUR FAVOURITE TIME OF THE MONTH!!**

**PLEASE READ ABOUT OUR 17TH CCF FAMILY**

Every CCF Family has its own worries and its own heartache but they are all connected by the two main reasons why we do what we do….their love and devotion for their sick child which has sadly created a huge financial strain on their everyday life.  These parents are unable to support their family financially as their child needs their 24 hour care.

Thank you all for raising awareness of the Charlie Cookson Foundation your support is vital to us.  You all play a part in easing the financial worry of our amazing CCF families.  Our dedicated volunteers and trustees work very hard in the background to keep moving us forward to enable us ‘to do what no other charity does’

Please take a little time out of your day to read about our 17^th CCF Family.  Mandy Kirsopp & John Kirsopp live in Gateshead, Tyne and Wear with their twin sons Dylan & Murray.

Dylan was the second born twin at 23 weeks, weighing only 1lb 6oz on the 14^th September 2007.  He spent 17 weeks in the RVI Special Care Baby Unit, 8 weeks being attached to a ventilator with his brother Murray.  His brother was getting stronger and stronger whereas Dylan suffered a collapsed lung, cyst on the brain and retinopathy of prematurity (a disease that occurs in premature babies.  It causes abnormal vessels to grow in the retina, the layer of nerve tissue in the eye that enables us to see.  The growth can cause the retina to detach from the back of the eye leading to blindness) Dylan required surgery at such a young age to prevent this from happening.

This little bundle was also diagnosed with Chronic Lung Disease (CLD) long term respiratory problems in premature babies.  This results from lung injury to newborns who must use a mechanical ventilator or extra oxygen for breathing.  The lungs of newborn (and especially premature) babies are very fragile and easily damaged. With injury the tissues inside the lungs become inflamed and can break down causing scarring. The scarring can result in difficulty breathing and increased oxygen needs.  Dylan required extra oxygen for the first year of his life.  His family were relieved and so proud of him when he was eventually weaned off oxygen, but they were then hit with more heart breaking news that Dylan was diagnosed with Four Limb Cerebral Palsy with Dystonia.

Cerebral Palsy is the term used for a group of non progressive disorders of movement and posture caused by abnormal development of, or damage to, motor control centers of the brain.  This alone is difficult for anyone to live with sadly Dylan had the pain from the spasms and muscle contractions caused by his Dystonia also. These spasms are very painful for Dylan and for his parents to watch they keep him awake every night and are becoming more and more frequent through the day.

All of this script is very clinical with a lot of medical terminology sadly this is what Mandy and John have been surrounded with for the past 7 years.  They were both working prior to the birth of their courageous twins Mandy as a Service Office Manager and John as a Sales Manager.  Their lives turned upside down when they were told their son needed 24 hour care and they both left their jobs to care for their family with the intensity of the care around Dylan.  Dylan’s twin Murray is able to walk, talk, play like a lot of children his age however he does suffer with Austistic Spectrum Disorder (ASD) which also adds to the daily pressures these parents have to deal with.

Mandy and John feel like they live 2 different lives, one trying to keep things normal as possible for Murray, school runs, playing, days out…this is regularly stopped due to the other life they lead medically and lovingly caring 24/7 for Dylan.  A lot of their life is divided to keep normality for Murray where Daddy would still go and let him experience what other children easily do, whilst Mammy cares for Dylan.

From an early age it was apparent that Dylan was unable to feed for himself he was aspirating his food into his lungs.  This is when a great deal of Dylan’s pain and discomfort began.  At a very early age he underwent surgery for a Peg to be fitted into his stomach.  A Percutaneous Endoscopic Gastrostomy is an endoscopic medical procedure in which a tube is passed into the stomach through the abdominal wall, most commonly to provide a means of feeding.

Further complications came with his Gastro-Intestinal Dysmotility. This is a condition in which muscles of the digestive system become impaired and changes in the speed, strength or co-ordination in the digestive organs occur.  This led to further surgery for a Stoma, this is a surgically created opening on the abdomen which allows stool or urine to exit the body.  This has to be changed several times a day, this along with Dylan’s incontinence, drug administration, peg feeding and physiotherapy makes daily life very hard.

This daily life became even more stressful in 2012 as Mandy and John were struggling financially and they made the decision that John had to return to work as they were very worried about keeping their home.  John managed to secure a job with a shift pattern that would allow him to bring a wage in but still allow him to care for his children.  This lightened the load for a short while however it had a huge impact on their family life and both their health.  They became very fatigued, physically and mentally drained.

Although there life has been full of worry and a great deal of heartache and stress, with endless amounts of hospital admissions and stays the love they have for their inspirational son who has battled so much keeps them going.  His laugh and smile helps them forget their worries for a short while.  He is unable to communicate verbally but he can laugh, cry, smile and use his eyes to let them know what he needs which a lot of the time is cuddles.

When this family applied to us there life was very hard but since then Dylan’s health has taken a turn for the worst.  Earlier in the year Dylan undergone bilateral hip surgery, which resulted in shortening his left femur.  Following surgery he developed a feed intolerance which resulted in him suffering severe pain, discomfort and abdominal distention.  This led to Dylan requiring a J-Get tube insertion gastric and jejunal extensions.  The gastric extension was to be kept on free drainage, collecting gastric juices. More distress for these amazing parents seeing another tube from their little boy, however what worried them the most was that the pain and discomfort was not easing for Dylan.

Further advances in his condition came when he was diagnosed with frontal lobe seizure disorder his seizures are now more and more frequent.  This along with recent discovery of his stomach completely failing has left them all devastated.  Much to their despair they were told that the J-Get tube insertion was not working, his pain was getting worse and he was having even more seizures, he was admitted to A & E just in time before his body crashed and he needed resuscitation.  Reading this is difficult but witnessing it as a parent, destroys you forever.

The next day when Dylan was more stable his Consultants had a meeting followed by a meeting with Mandy and John. They were told that his complete digestive system was in total failure and was unable to take any feed for the foreseeable future and the decision was taken to take Dylan to surgery for a Port-A-Cath to be fitted to allow his nutrition to be total TPN (Total Parenteral Nutrition, a solution containing all the required nutrients including protein, fat, calories, vitamins and minerals)

Dylan is currently on the Children’s Ward of the Royal Victoria Infirmary, Newcastle and will be there for a good few month until they stabilise his feeding via his veins and get control of his seizure activity.  This has put an immense pressure on this family who have suffered so much the past 7 years, they are now seriously struggling financially owed to the extra expense living in hospital.  Mammy stays with Dylan whilst Daddy is at home with Murray, trying to work when he can.  These separate lives not only take its toll on their finances but also on their life as man and wife and as a parent to both their children.

The Medical Professionals we have spoken to in support of Mandy and John’s application speak very highly of their care they provide for Dylan and Murray, they are full of admiration for them.  It is our pleasure to financially support this family who have been through so much.  Mandy cried tears of relief when we gave them the news..

A Quote from Dylan’s Mammy;

The generosity and support from CCF has made what is a devastating and very difficult time much less stressful. The financial worry we were facing before was crippling and is now something we can put to the back of our minds and allows us to give our boys our full attention they deserve.

The Charlie Cookson Foundation was created in memory of our brave angel in the sky.  We feel the pain of each and every one of our CCF Families as we can relate to everything they say.  We met so many of them when our Charlie was with us and we all shared the same stresses and heartache.  This is where our supporters, donators, volunteers and trustees help …they take away their financial strains so they can focus 100% on their sick child without that dark cloud above them.  The time they have with them is very precious.

Keep flying high Charlie, we are so proud of what your name is achieving….we know you will watch this special family, keeping Dylan safe.  Catch our butterfly kisses little legs we miss you very very much xxxxxx

Thank you all so much for your continuous and valuable support love from Sarah, Chris, Helen, Chris and Dan.