The Charlie Cookson Foundation

Inspiring Isabelle

Our 8th CCF Family

Isabelle Ann Wilson – Our 8th CCF Family

Please meet our EIGHTH CCF FAMILY !!! We will financially support the parents of this amazing little girl Isabelle Ann Wilson. Isabelle is 6 years old and lives with her Mammy and Step Daddy in Nottingham. Isabelle’s Mammy Sarah is her full time carer/mammy and mammy to her youngest daughter 1 year old Ellie. Her Step Daddy Alex is a self employed Joiner who struggles to keep a wage coming in.

Thank you to all of you who have helped make this happen, without you all we would not be able to relieve this family of their financial burdens for a period of 3 months! The relief in the voices of the Mammy’s & Daddy’s warms our hearts when we tell them we are going to help them, they have all been overwhelmed with the generosity of all of our supporters who help us raise our funds! Please share in this “feel good” feeling if you have donated or bought from our Cookie’s Corner, bought a wristband, attended fundrasing events or helped us in anyway! Tell everyone about these families, they are inspirational and hold a special place in your heart for our CCF Families

 Prior to Isabelle being born Sarah would work 40-50 hours per week managing a busy spa, her plan was to return to work after maternity leave, her life was to take a different and heartbreaking path when Isabelle was born prematurely at 26 weeks on the 16th June 2008. Having Isabelle as her first child she thought nothing of feeling poorly as she knew no different, at 26 weeks she was diagnosed with pre-clampsia and Isabelle was born at just 830grams.

At 6 weeks Isabelle developed Necrotizing Enterocoli (NEC), the most common and serious intestinal disease among premature babies. This happens when tissue in the small or large intestine is injured or begins to die off. This causes the intestine to become inflamed or, in rare cases, develop a hole. When this happens, the intestine can no longer hold waste, so bacteria and other waste products pass through the intestine and enter the baby’s bloodstream or abdominal cavity. This can make a baby very sick, possibly causing a life-threatening infection. Isabelle became seriously ill she started to fit and her blood pressure was dangerously low.

The Doctors were struggling to save Isabelle, nothing was working, this beautiful little girl had to have part of her bowel removed and has a stoma (a surgically created opening on the abdomen which allows stool or urine to exit the body) It was at this point they were given the heart breaking news that Isabelle had severe brain damage effecting the whole middle section of her brain. After 14 weeks and 6 operations Isabelle was allowed home only to be re admitted 8 days later. Isabelle had an inclusion in her bowel and she needed another operation, this happened a further three times.

“The next few years seem like a blur I had never witnessed anything like it before…Isabelle would cry constantly and went rigid and red with pain” Isabelle’s Mammy. Isabelle started to fit startled movements she could have 200 – 400 a day. In April 2009 she was diagnosed with West Syndrome, this is a severe epilepsy syndrome composed of the triad of infantile spasms, an interictal electroencephalogram (EEG) pattern termed hypsarrhythmia, and mental retardation.

They managed to have a sometime at home but life was not easy, in July Isabelle was admitted with severe dehydration, from this point she had to be permanently NG Fed (Fed via a tube through her nose to her stomach) she had lost all suckle and they were told she must be nil by mouth as she aspirated when she swallowed. This led to Isabelle having further surgery for a PEG (percutaneous endoscopic gastrostomy, a surgical procedure for placing a feeding tube without having to perform an open laparotomy (operation on the abdomen) in March 2010.

“As I knew nothing about children with disabilities I found it very difficult to cope, my life had been torn apart. I was no longer a Mother I was a Doctor, Nurse, Physio, OT and a mother last. This was not what I had planned for our future, I thought I would be able to return to work and financially support my daughter, this was not my path. With the help of medication Isabelle became a little easier to manage, I hate “drugging” my daughter but this is the only option for us” Isabelle’s Mammy Sarah

These are heart breaking words to read, Sarah’s life revolves around her daughters, more so Isabelle with all her needs, her day begins at 5am when Isabelle wakes up often very unsettled, she then spends the next few hours administering medicines, doing Isabelle’s cares, suctioning, preparing and administering her gastro feed. If Isabelle is well enough she will attend school but this has not been the case for most of 2014, they have had a tough summer where she has had a good couple of days then a very stressful and tiring three days continuously. Throughout the day the hard work continues, administering nebulisers, medicines and feeds, positioning, physio, suctioning, dealing with prolonged seizures along with taking care of her young daughter Ellie. A lot of this is done on her own as her partner has to go where the work is which may be away from home.

Isabelle suffers an awful lot of chest infections, pneumonia which is life threatening to her and sadly has the following diagnosis;

Severe Bilateral Cerebral Palsy

Mixed Spastic/Dyskinetic GMFCS Grade 5

Focal Epilepsy

West Syndrome

Gastrostomy Feeding

Intermittent Stridor

Isabelle’s Mammy and Step Daddy do everything for their family, the 24/7 care Isabelle requires adds a lot of strain to their family life, Alex works as much as he can to keep them ticking over whilst trying to help alleviate some of the strain from Sarah.

All of this worry along with having to deal with the fact that their beautiful daughter has a life limiting condition is a living nightmare, they try their best to have some “nornmal” days but this has proven to be impossible lately, Isabelle has not had a good full week for a while now. They treasure every minute with both their blessings, life is very difficult but a smilefrom their precious Isabelle makes it all worth while.

Sometimes I feel like I’m living In a bubble and everything around me moves forward but I’m stuck holding on to Isabelle, I wouldn’t change our children but I wish Isabelle could tell me what is up. I think it’s the not knowing that’s the hardest. I can’t thank the Charlie Cookson Foundation enough, your kindness and generosity is amazing. You are all true angels. We have never had any one be as kind as you all. This help means we can clear some debts and enjoy some quality time together as a family” – Isabelle’s Mammy Sarah

 This is why we do what we do!!! We can not thank you all enough for your support, you are all giving this family some breathing space, some time together, some memories as a family, this is so precious to parents of a child with a life limiting condition. There will be less pressure for Isabelle’s step dad to go out to work, he can stay at home and help relieve the pressure from Sarah and value their time together without the financial worry.

 Well done to you all, this is our way of taking care of this family for a short while….Big kisses to our Charlie (our Butterfly) you are such a clever boy, we are so proud of you…we miss you more than words can describe…..catch all of our butterfly kisses, love you so much xxxxxx