Another precious CCF Angel has grew his wings
All at the Charlie Cookson Foundation are sending much love and strength to our 12th CCF family today as we say a final goodbye to a very inspirational little hero ‘CAPTAIN CARSON’
Carson Hartley sadly grew his angel wings on Tuesday 2nd June 2015 aged just 5 years old. Carson’s fight for life was nothing short of difficult where he faced many days battling his condition but Carson was also such an adorable and courageous little boy so full of life and mischief.
There are no words we can say that will take their heartache and pain away…..but we do hope all the special times they have shared together with Carson will bring them great comfort at this very heart-breaking time.
We send our deepest sympathy to all who knew Carson and thank his family for allowing us to join his truly inspirational journey. Fly high and free from pain with the angel’s precious one….you will forever hold a very special place in the hearts of all at CCF.
Please read the story of this amazing little boy and his family below….
****OUR FAVOURITE TIME OF THE MONTH!!****
The Charlie Cookson Foundation has now brought financial relief to 12 inspirational families all over the UK. The Trustees of the Charlie Cookson Foundation were overwhelmed with our December 2014 family, every Christmas they are thinking ‘Is this our last one with our sick child?’ ‘Is our sick child going to see Christmas?’ then they worry about can we afford to make it a special one for their family?
Please read about our CCF December Family….
Kirsty Harris & Damian Hartley live in Liverpool and are the parents of the truly amazing Carson Hartley, this little boy has been through so much in his short life of only 3 ½ years. From birth, Carson and his family have shown so much strength battling through such heartache along with Carson’s siblings. Kirsty and Damian’s life is extremely difficult but the love they have for all of their children gets them through each day, their 18-year-old daughter lives with Kirsty’s mother, as she also needs hands on care owed to having her own disabilities and the mental age of 1 year old. They also have another 3 sons Lewis, aged 14 years, Ethan aged 13 years and Layton aged 7 years. When you read further into the daily life of this family, you will have so much admiration for them. The daily struggle the whole family witnesses with Carson has deeply affected these children Ethan in particular who has been diagnosed schizophrenic and struggles to accept how poorly his little brother is.
Kirsty and Damian try their very best to keep their family unit as tight as they can, they dearly love all their children and want them to be around Carson as much as possible to make many special memories that will last them a lifetime. They do an amazing job their hearts ache everyday knowing what their future holds.
When Kirsty was pregnant, they all lived in Accrington, at 26 weeks Kirsty discovered that she had a water infection at this point they were devastated to be told they could not find a heartbeat. This led to an emergency delivery of their beautiful boy that was born not breathing the Doctors and Nurses made four attempts to resuscitate their premature baby and like a miracle their little baby began to breathe on their fourth and final attempt. His parents were so relieved that their baby was alive but at the same time petrified by the fact that he was going to be very poorly. Carson was ventilated immediately to help him breath, he was extremely weak and was struggling to gain weight. At 3 months old he suffered a heart attack, he was very fragile, weighing only 3lb this little miracle was taken to theatre for a cardiac shunt to be fitted to allow blood flow to and from his little heart. Carson was too complex for their local hospital and had to be transferred to Alderhey Hospital in Liverpool.
It was here that Kirsty lived with Carson for 2 years, just the two of them with visits from the rest of the family when they could afford the travel and even at times when they really could not afford it but wanted to be together. Kirsty had to battle on her own to persuade the Consultants and Anaesthetist to give Carson a tracheostomy, none of them wanted to risk him going to theatre in case he did not come through. Kirsty knew her little boy inside out, she knew he had the strength and wanted to be here, eventually they listened and Carson was fitted with a tracheostomy at 11 month old.
After enduring such invasive investigations, skin biopsies, muscle biopsies, lumber punctures the list goes on…The following conditions were diagnosed in the first year of Carson’s life;
- Right sided pneumothorax – oesophageal perforation
- Chronic Lung Disease
- Gastrostomy – feeding tube into stomach
- Fundo – tying of the stomach to prevent vomiting
- Cleft Pallet, Glottic Stenosis
- Bilateral subqlottic cysts
- Vocal cord palsy
- Laryngo Malacia (floppy larynx) – Desaturation (blue episodes)
- Tetralogy of Fallot – Congenital heart defect.
- Grade iii IVH – bleeding in the brain
- Metabolic Bone Disease
- Perventricular Leukomalacia (PVL) – a form of white matter increasing in the brain
All of this looks horrific for any child to be labelled as suffering, however they all knew something else was still underlying and further investigations were carried out.
Kirsty and Damian lived separate lives for 2 years. Kirsty lived in hospital with Carson miles away from her daughter, three sons and husband. Damian played the role of two parents to their other children. Both parents felt torn! This put a huge strain on their family and them as a couple they knew they had one chance to keep them together…they up rooted and moved to Liverpool to keep their family unit together. They had found themselves in a great deal of debt owed to the added expense of travelling to and from Liverpool that they are still trying to pay off.
Carson was allowed to go home in February 2013, however it was like still living in hospital for them all, just with different walls. Kirsty and Damian were trained to care for Carson like a Nurse/Doctor. Every day they live with the fear of their little boy turning blue…grey…and stop breathing, they have lost count of the amount of times they have to bag their child to keep him alive, pushing the air to inflate his lungs. This is terrifying for any parent, this is what they have to cope with until the ambulance arrives, Kirsty spoke about how the control does not stop when help arrives, they have been so hands on with their little boy, and the hospital staffs assist the parents in Carson’s emergency care. They are truly amazing.
This little boy has endured 45 operations to date and so many investigations, this family lives in a goldfish bowl with carers living on a shift basis in their ‘home’ life is extremely difficult then are dealt with another blow…a life limiting diagnosis for their little miracle. Carson was diagnosed with Mitochondrial Disease.
(In every cell in the body Motochondria are responsible for producing energy (called ATP) that the cell needs to function. Cells make up tissues and organs in our bodies for example the heart and the liver. If our cells do not have energy then the tissues of body organs that the cells are made up of do not work properly)
There is no cure for this disease and this family is devastated at the results of a recent MRI showing that this disease is progressing at a fast pace.
Carson relies fully on his ventilator over night as his body shuts down, his liver is failing and his gut is also failing and is struggling to tolerate the milk feed into his stomach. He is currently being fed via G-Jet, which is a low profile gastric – Jejunal enternal tube, they are praying this way of feeding works, as it will provide him with the nutrition he needs. If this fails the next option would normally be to provide nutrition with TPN via his veins, but sadly this will not be the next step for Carson, as he will become too poorly with this method.
This family have struggled and fought to keep their little boy alive whilst trying their very best to give their other children as much love and attention they need. Finances have been next in line and has been such a burden to them they have used their cards to pay for petrol to be with each other, they would spend £40 in the hospital canteen every day for their family to eat, they paid for hotels for 2 years so they could be together…these bills plus more are still there along with their current day to day living expenses. Their electric bills are very high owed to the amount of machinery they need for Carson, when one machine is on the other is charging up. The gas bills are also very high especially at this time of year they need to keep the house warm to keep Carson safe.
Kirsty’s tears flowed when I gave her the news that they would be our December family, she sleeps with her bills under her bed, she looks at them every day thinking about how she can pay them?? Her husband commented ‘Thank you CCF for making my wife smile again’ we feel blessed that this family found us….they are in desperate need of our help.
Quote from Kirsty;
This Christmas was going to be a tough one especially with Carson’s recent diagnosis so we wanted to make it as special as possible for him but unfortunately due to the debt we ran up whilst hospital living and the daily expenses we have we were struggling that was until I received the most precious phone call from Sarah telling us we were their December family I cried sad and happy tears and when the call finished my 7 year old said to me ‘Mummy I haven’t heard you laugh for so long’ I told him it was because a special angel had made our Christmas special we can’t thank Charlie/CCF and his family and supporters enough and thank you doesn’t seem enough the stress and sadness has gone for a little while and we can just enjoy some quality family time thank you from the bottom of our hearts xxx
At this time of year, we are so pleased to be able to give this family a Christmas with no financial worry…make special memories…showered with fairy dust from our Angel Charlie.
Our heart is warmed every time our Charlie brings us these families, thank you little legs we love you so much. A very tearful Christmas day for Mammy and Daddy but also, smiles of happiness seeing these families enjoy theirs without that awful worry of money.
Well done to everyone who has helped make this happen!
Love from all of the CCF Trustees; Sarah, Helen, Chris, Dan, Chris, Andrew, Cookie’s Corner and all our fantastic Volunteers xxx