The Charlie Cookson Foundation

Registered Charity Number: 1166538
South Shields, Tyne & Wear

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Our 19th CCF Family - Reece Burrows

Date posted: 01 Dec 2015

**OUR FAVOURITE TIME OF THE MONTH - PLEASE READ ABOUT OUR 19TH CCF FAMILY** 

Every family we financially support are truly inspirational, they find the strength to get through each day to care for their sick child whilst living with such worry….How long have they got together? What will the day bring? When is their next medication? How are we going to pay these bills?  Sadly we are unable to help them or give answers to all of their concerns and worries but we can take away their financial burdens for a period of 3 months to allow them to spend quality time with their sick child without that dark cloud hanging over them. 

Thank you to all of our supporters, donators and volunteers you are all doing an amazing job helping our foundation raise vital funds and much needed awareness.  Together we are all successfully sharing the ‘Charlie Effect’ reaching overseas to our courageous 19th CCF Family from Northern Ireland. 

It is our pleasure to tell you all about this amazing little boy and his family, Reece Burrows aged 5 from Ballinaskeagh, Northern Ireland.  Reece lives with his Mammy Dawn, Daddy Martin, his older brother Xander aged 8 and his twin brother Seth.  Their story will fill you with such emotion, a new life beginning similar to all parent’s after 9 months of nurturing that sadly turns into a road of heartbreak and worry. 

In the early stages of Dawn’s pregnancy they feared that she might have suffered an ectopic pregnancy, to their delight they discovered she was having twins. They were overjoyed with the news the pregnancy went smoothly, the birth also had no complications and both Reece and Seth were discharged for home.  All was well, they were enjoying being an extended family for the first few weeks, but sadly this all changed when the twins were 3 weeks old.  Very quickly they became seriously ill at home and were blue lighted to hospital. 

Upon arrival Seth was admitted to a ward to be assessed where Reece was admitted to Rhesus, he was not breathing, Dawn and Martin were in total shock they thought they had lost their little boy. 

Reece was resuscitated thirty one times, when eventually his fighting spirit came through and began to breath, he was intubated immediately and admitted to intensive care.  Tests were carried out and they had both contracted Parechovirus MeningitisSepticemia and Hepititus.  Their parents were heart broken, they were living every parent’s nightmare.  To add to their devastation Reece was moved to Belfast Hospital as he was extremely vulnerable and needed further expertise.  Dawn and Martin felt like their hearts were torn apart wanting to be with both Reece and Seth.  This added to their daily stress and worry, they were exhausted travelling to and from two hospitals caring for and nursing their sick children, whilst trying to keep the normality going for their eldest child living at home.  All this was soul destroying and draining for themsadly to add to their heart break was the devastating news the Consultants delivered about Reece. 

Reece’s brain had been starved of so much oxygen, the experts feared for the extent of the brain damage that had occurred.  They told parents that Reece was not going to be able to walk, talk, feed himself and will require 24/7 care.  This was the beginning of a whirlwind of hospital appointments, admissions, stays and medicine education. Dawn spoke of the guilt she felt and still feels, ‘Did I do something wrong’ ‘Should I not have taken them outside’ she remembers looking at Seth feeling blessed that he is going to live on with no permanent damage and then her heart sank when she looked at Reece knowing that his quality of life is going to be a million miles away from the normality his brother will have.  After the twins were discharged, Seth began to gain weight and was thriving well at home where as more problems began to unfold for Reece.   He was unable to feed and they were worried about his weight loss, he was admitted to hospital for a NG Feeding Tube (A nasogastric tube is a special tube that carries food and medicine to the stomach through the nose.  It can be used for all feedings or for giving a person extra calories)  

The swelling of his brain, due to his neonatal infection led to severe brain damage, over time the experts began to compile a long list of diagnosis.  The day Reece contracted neonatal sepsis meningitis changed their lives forever, sadly resulting Reece with the following diagnosis; 

  • Complex Global Development Delay 

  • Cerebral Palsy 

  • Epilepsy 

  • Failure to thrive - insufficient weight gain or inappropriate weight loss. 

  • Central Sensitization - a condition of the nervous system that is associated with the development and maintenance of chronic pain. Whencentral sensitizationoccurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity. 

  • Cerebral Visual Impairment (Registered Blind)  

  • Microcephaly - abnormal smallness of the head, congenital condition associated with incomplete brain development. 

  • Feeding Difficulties  

Dawn and Martin had to very quickly take in what the Consultants were telling them, the brain is vital to the mechanics of the body, In every day ‘normal life’ you don’t realise your brain is telling your stomach to digest if your brain is not working this results in many nutrition complications.  This little fighter could not digest any food, his gut was shutting down as his brain could not relay the messages.  This was a real worry for Dawn, Martin and the Consultants and the decision was made to send Reece to theatre for a button (gastrostomy tube) this procedure was a success however his condition was so severe that his stomach still could not deal with this, and further decisions were made to feed Reece direct into his intestines (JEJ).  They persisted with this way of feeding but it was not a success, Reece was vomiting profusely and in a lot of pain his bag was on constant drainage and his potassium levels were very low.   

Reece being in pain is so distressing for him and his parents to witness, his ‘Central Sensitizaton makes his suffering so much more intense and painful.  It was at this stage that the Doctor’s and Reece’s parents decided to feed him through his veins. ‘Total Parenteral Nutrition also known as intravenousfeeding, is a method of gettingnutritioninto the body through the veins. They were hoping this procedure would be a move in the right direction to their uttermost despair Reece caught an infection in his bloodstream and they almost lost their little boy.  Reece became extremely unwell, his family did not think he was going to pull through, the Doctor’s done all they could and his fighting spirit overcame this life threatening infection. Such relief for his parent’s but at the same time the worry intensified about how they were going to feed him, keep him alive.   

They had no choice but to return to jejunal feeding (jejunal feeding tube is a small feeding tube which is placed into the jejunum (small intestine) so that children/adults can have feed, fluid and medication without swallowing).  This was a route they had no choice but follow, he was too vulnerable to attempt TPN again (at this moment in time) His Mammy and Daddy knew in their hearts that JEJ feeding was going to cause him upset and pain but it was the only way to keep him alive. 

Reece’s Mammy Dawn poured her heart and soul into telling us about her inspirational little boy, she felt “It’s only when you sit to write everything down that is sounds like a complaint, but really I would go to the ends of the earth for our wee Reecey!”  Their daily lives are both exhausting and frustrating, Reece does not sleep at night he just screams in pain from his continuous JEJ feeding in a bid to get  calories into him. It is incredibly hard for his parents to watch and be unable to ease his pain, they feel like they are force feeding him.  Heart breaking for a parent to turn the start button on a machine that you know is going to cause your child pain, but what choice do they have….none! 

By the time morning comes round they are already exhausted from the night, Dawn left her full time job as a Civil Engineer to care full time for her son, Reece’s Daddy Martin works 12 hours day or night shifts as a Lab Technician.  Both parents are extremely drained physically, mentally and emotionally.  There are days when his Daddy works/cares around the clock and days where his Mammy cares around the clock.   

Reece has not been well enough since his blood infection to attend school, which means his Mammy has no break at all, the rest of the day becomes a blur of medicine, physio and feeds.  Dawn worries so much; 

How do the other boys feel that we can’t spend as much time as we should with them?”  

“How is Marty coping at work with so much sleep deprivation? 

“When will Reece have his next seizurevomit or hospital admission? 

Then the worry of what seems so trivial to the worry of the health of their child …their financial worries, which are still so important, “Will we have enough money for the food shopping?” 

All of this worry has taken its toll on Dawn’s health due to sheer exhaustion, they want to give their children the best quality of life they can and it frustrates them so much that they haven’t got the energy or finances to do this.  Reece is frequently admitted to hospital, their nearest hospital that can care for Reece is an hour’s drive away, Dawn stays with Reece when admitted which is very hard emotionally for her as she feels torn, she misses her other children and her relationship with her husband well sadly becomes non existent 

Dawn told us of her pain, watching her child suffer knowing that you agreed to the treatment is soul destroying but what else can they do?  The pressure filters down to the family to her Mother who looks after the children at home whilst Dawn is in hospital with Reece. Then there is the emotional turmoil for Martin who wants to do more for Reece but must stay at home and in real terms keep a roof above their heads. 

The days that Reece is well sadly this family can still not do ‘the norm’ they can’t attend places like soft plays, cinema’s, shopping centres as the Central Sensitization affects his hearing, all of the nerves are heightened making normal sounds incredibly painful for him, even at home the kettle, hoover even the toilet flushing sends Reece into a painful state.  To distract himself he beats his face or head, often causing himself injury.  When this happens in public, Dawn struggles to deal with the onlookers and leaves her feeling extremely isolated. 

Dawn and Martin are eager to receive a date to travel to the Royal Victoria Hospital in Newcastle upon Tyne to seek further advice on how they can treat Reece and are praying they can help them make steps to giving their amazing little boy a better quality of life. They both know that his little body is exhausted from the seizures, pain and discomfort. 

“I want to hold on to this boy as long as I can, He is my life” Reece’s Mammy 

This little boy is truly an inspiration, although he sadly has a list of disorders/conditions resulting from that heart breaking day he was blue lighted to hospital at three weeks old, he also has an endless list of what makes him so special…his smile, his cuddles, his love for his family, a laugh that will melt your heart…a true blessing. 

Quote from Reece’s Mammy Dawn; 

Thank you will never be enough for what CCF have done for us, the peace of mind we now have knowing that we can go to Newcastle and have the additional funding needed for all those extras that appear through hospital stays while still keeping our home running smoothly while we are away.  

Even with no sleep and dealing with our "norm" everyone's mood is so much lighter. To know that a family has been through so much but still has the heart to do something like this to our wee family and so many others is truly amazing. Thank you so much x 

 

The Charlie Cookson Foundation was created in memory of our courageous son to allow us to financially support parents in such difficult heart wrenching circumstances. It is our pleasure to relieve these parents of such financial worry to allow them to spend quality time with their family without a heavy cloud of money problems hanging over them. Sadly they have enough keeping them awake at night. 

Thank you to all of our supporters, donators and volunteers you are all contributing to the financial support we can give to these amazing families.  Lots of love sent up to our angel Charlie another special little boy for you to watch over…we miss you so much, fly high Charlie your courage continues in us all.  Love from all of the CCF Trustees Sarah, Chris, Dan, Helen and Chris xxx 

For more information about The Charlie Cookson Foundation and how you can support us please log on to our website: www.charliecookson.co.uk 

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