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

**PLEASE READ ABOUT OUR 16TH CCF FAMILY**

We can’t thank you all enough for your amazing support! All of your tweeting, sharing and liking is having a huge impact on our foundation reaching out to those families that are in desperate need of our help.

We are growing from strength to strength and our applications for funding are also growing in numbers.  These families have looked everywhere for the support they need to ease their financial worries with no success until now.  We change the lives of these incredible families, we did not want to give them a small amount that would maybe pay one of their smaller bills, we wanted to take away their financial strains that will ease their worries for a period of 3 months, allowing them to pay £3000.00 off their bills.  Their electric bills increase due to the amount of machines their child needs, always one on charge and one working, their gas bills are always high as their child needs to be warm all year round, their travel costs are always a worry owed to the many hospital appointments and admission…the list goes on.  In some cases, these families have lost their homes and are at breaking point! Your support has changed the lives of our already funded CCF Families and will continue to change the lives of our future CCF Families, thank you so much your support is so very valued and appreciated.

The parents of our CCF Families have the choice to go public with their story.  It is a lot to ask of them to share their lives that have been full of heartbreak, worry and stress. Our 16^th Family would like their story to be shared with you all, however they would like there to be no pictures shown of their inspirational son.  The Trustee’s have seen a picture of this amazing little boy, his eyes are full of love and his smile just melts your heart, we respect their wishes and we ask you all to build a lovely picture in your mind of their courageous son as you read  their story.

It is our pleasure to introduce to you our APRIL 2015 FAMILY who live in Southampton.  Alexandra Cordos and Lucian Cordos are the parents of 3 year old Gabriel who live in Southampton.  Alexandra is a trained Nurse and Lucian is a trained Health Care Support Worker.  Their son Gabriel was born on 31^st January 2012, 6 weeks early after a problematic pregnancy with his twin who sadly grew his angel wings when Alexandra was 12 weeks pregnant.

Two days after Gabriel was born the parents were told that their son had a cleft palate and cardiac problems, also low set ears and a tag on his right ear.  The doctors wanted to run more tests as they suspected that Gabriel had problems with his genetic makeup.  Two weeks after these tests the parents were given the heart breaking news that their son has a genetically translocation that is linked with Cry du chat syndrome, but it was not the typical translocation.  The doctors were unable to give them much information as they could not find any evidence of anyone else in the genetic database with the same translocation, Alexandra and Lucian felt that their world was spinning, to be given such a blow then no questions could be answered, they were drowning in their heartache.

This syndrome is caused by a break in the DNA molecule that makes up a chromosome.  In most cases the chromosome break occurs within fertilisation, the parents do not have the break in any other cells of the body and does not have the syndrome.  The name of this syndrome is French for “cry of the cat”, referring to the distinctive cry of children with this disorder.  The cry is caused by abnormal larynx development, one of the many symptoms associated with this disorder.

Sufferers of this syndrome have very distinctive features; they may have a small head (microcephaly), an unusually round face, small chin, widely set eyes, folds of skin over their eyes and a small bridge of the nose.  Several problems occur inside the body such as hearing defects, muscular or skeletal problems, hearing or sight problems, or poor muscle tone, difficulty walking and talking.  They may have behavioural problems and severe intellectual disability.

After 6 weeks of hospitalisation Gabriel was discharged home using a nasogastric tube for feeding (a special tube that carries food and medicine to the stomach through the nose)  Owed to his cleft palate and his cardiac problems little Gabriel was unable to breast feed…he simply did not have the strength.  At this point Lucian had to return to work which added a lot of strain to Alexandra as she was expressing as much as she could to feed her little boy via his NG Tube every 2 hours, night and day, the expressing only lasted 5 months as Alexandra was too exhausted and Gabriel started on formula.

Five months later they attended Southampton hospital to see the Cardiologist where Gabriel had a Cardiac Catheter inserted for investigation to establish how complicated his cardiac problems were and agree a date for his surgery.  After 3 hours of trying to intubate Gabriel with the anaesthetic failing he was eventually intubated by ENT and taken to intensive care to be kept sedated and give him time for his airway to recover.  After two days of painful discussions the PICU team, the Cardiologist and the ENT advised these already distraught parents that Gabriel needed to remain fitted with a tracheostomy.  The idea of going back to their home at the time in Somerton rang alarm bells as the nearest hospital with a PICU unit was 2 hours away in Bristol.

Whilst Gabriel was sedated and they were waiting for his airway to recover to have a laryngoscopy, things became complicated, Gabriel’s abdomen was blocked and hard, he was immediately taken to surgery to see what was going on.  Gabriel’s intestines were blocked with air and there was no bloody supply his lower intestine, but the Surgeons could not find where the restriction of blood was coming from.  They deflated his intestine and told his Mammy and Daddy the only option they had was to wait two days and see what happens.  These parents were so worried again they were in a position of no answers!  Two days later when Gabriel undergone further surgery they discovered that Gabriel’s intestines were necrotic (dying) with only 7cm of the jejune left.  His Mammy and Daddy were then asked the question “Do you want your child to be fed via his veins (TPN-nutrition via veins) or give up on him!”  There was no question, these parents were looking at their little boy and without a doubt they wanted to give him the chance of life.

His problems and conditions are painful to read when in black and white, but when you look at the face of this little boy they disappear for a short while;

• Cry du Chat Syndrome
• Short Gut Syndrome
• ASD & VSD Repaired – A hole in the wall between two upper collecting chambers (ASD) and between the two bottom pumping chambers (VSD)
• Awaiting bowel transplant
• Visual Impairment
• Tracheostomy Stoma (Decanulated)
• Recurrent Chest Infections
• Dependent upon Total Parental Nutrition

After this huge blow the parents stayed in hospital with their Gabriel for nine months, one parent could stay at the living quarters in the hospital grounds to get a little rest whilst the other stayed with their amazing and courageous son.  This is where life became almost impossible financially, they had to give up their home as they could no longer afford to pay the bills and they moved to Southampton as they needed the security of a hospital with a PICU nearby, at this point they had no real home, just hospital rooms and quarters.  They searched for help to try and secure them a home with no success, the around the clock care their son needed along with trying to find themselves somewhere to live when (in the hope) he could be discharged was draining the life out of these devoted parents.  Eventually with the help of Alexandra’s sister they managed to rent a house in Southampton and Gabriel was discharged.

They were struggling financially and Alexandra had to return to work part time, this meant her travelling for almost 2 hours back and forward for 6 months until she managed to secure a job nearer to home.  They were both exhausted, but they feared if they stopped they would lose their home and what would happen to Gabriel.  Lucian used to work as a car mechanic but had to have a career change and start work as a support worker for an agency to give the flexibility of their shift pattern in caring for Gabriel and in case Gabriel needed to be admitted to hospital, Lucian was the only one who could drive.

This was the plan…but living with a child with complex needs, plans never work out.   As the months went by Gabriel was in and out of hospital with chest infections.  After years of trying to cope with Gabriel’s medical condition, sleep deprivation, heartache, stress and work Alexandra became so exhausted and her health was suffering her body collapsed, it just could not cope!  She had to give up her job, the 24 hour care Gabriel needs is very demanding, to hold down a job with this amount of pressure is nothing short of impossible.

Lucian’s part time job of two night shifts a week is the only money they have coming in, but this in itself adds strain to their relationship, one at home caring for Gabriel, whilst the other trying to focus on their paid role whilst their heart and mind is worrying about what is happening at home.  No real family/partner time to try and relieve a little pressure.

Their little boys needs both of his parents to care for him, attaching his TPN equipment is a surgical hand antisepsis procedure with gloves and apron required, along with changing his dressing from his tracheostomy stoma, changing his stoma bag, these procedures can take around 90 minutes every morning and evening.  He requires supervision at all times and is very vulnerable.

After speaking with Gabriel’s Mammy I was left with pure admiration for these parents and the strength of their little boy.  They have battled from day one to keep their child alive with very little support, their feeling of isolation echoes the words of our previous CCF Families.  Gabriel was admitted to intensive care on his last hospital admission earlier this year and both parents have seen the beginning of a downward spiral of his condition since.

Like all the parents of our CCF Families, they never know how long they have with their child this heartache is with them every day and will never leave them even when their child grows their angel wings.  Alexandra and Lucian have had to say their goodbyes and send their love to the sky with Gabriel’s twin, and they know at some point they will be doing the same to their only child they have with them.

Quote from Gabriel’s Mammy;

It is very difficult to say in words how much the financial help and support given has made a difference to us.   CCF kept a roof above our heads, especially when we already lost our home once.  You have relieved a huge part of our stress and gave us the opportunity to concentrate on our son Gabriel.  He has been so poorly lately.  I could never thank you all enough for your support xxx

When I spoke to Alexandra, she spoke with such emotion, she was grateful to speak to someone who appreciated and could relate to what she was saying and the financial help we gave them blew away that dark cloud.  They have lived through the worry of having no home, and in fact losing their home, she immediately asked us to pay her rent, to take away that fear she dreaded happening again.  We did this because of YOU…our supporters and volunteers.  The Trustees of the Charlie Cookson Foundation feel blessed that they are able to channel a charity that can change the lives of such inspirational families.

Thank you all so much….we could not achieve this without you all, we are truly grateful of your support.

Big butterfly kisses and so much love sent up to our Angel Charlie, your name amazes me every day you achieve so much up there free from pain.  Blow your angel dust over this family to keep them safe.

Love from all of the CCF Trustees; Sarah, Chris, Helen Dan and Chris, and all the fantastic CCF Volunteers xxx