Bros N Munros

Funny Lumps - Bros 'N' Munros

Fundraising for Tumour Support Scotland
£3,286
raised of £400 target
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Bros 'n' Munros, 14 January 2019
Tumour Support Scotland

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RCN SC039910
We support children and young people to live with Neurofibromatosis.

Story



The birth of your child should be a precious memory that you can look back on for the rest of your life. A memory that fills you with happiness, remembering the first time that you held them in your arms, the first time they fell asleep on you, that immediate feeling of unconditional love filling your heart and realising that you will do all that is in your power to give them the best possible life.

On the 22nd December 2010, my son Aiden was born. What we did not
know is that he was born with enlarged muscles around his heart, meaning that his heart had to work a lot harder to try and keep the blood and oxygen flowing round his body. His little heart struggled, he stopped breathing and went into cardiac arrest.

When Aiden was born he was not the 'usual' baby colour, he had a
dark blue complexion, he was struggling to breathe, but the midwives initially said that he would be fine. They soon noticed that he was struggling to breathe and rushed him away, leaving Aiden's mother Emma and I scared and wondering what was going on. Our new born son had been taken away from us, minutes after he was born with no idea when, or if he was going to be brought back to us...

After what seemed like a lifetime, a doctor came and explained to
us that Aiden's heart wasn't working properly and that they were blue lighting him to Yorkhill with a police and helicopter escort and that they were shutting down the slip roads on the motorway so that they could get him to Yorkhill without any interruptions. My dad tried to joke that he had a better police escort than the Queen.

The best moment of my life, quickly became my worst. They brought
my son down to us in an incubator, he was lifeless, attached to a ventilator so that the machine could breathe for him. Emma had just brought him into the world and now we were being told that there was a high possibility he wouldn't survive the journey to Yorkhill.

The staff at St. John's were amazing, they stabilised Aiden, organised the transport to Yorkhill, all  the while they were so supportive to Aiden's mother and I, they could not have done more for us. Aiden stayed at Yorkhill, and the medical and nursing staff worked round the clock
with him so that he was strong enough to return to St. John's, and to our delight he came home with us on New Years Day.

Thirteen days later Aiden's health drastically declined, he went into cardiac arrest again in his mother's arms. In a state of panic, they got
him in the car and rushed him to the health centre in Bathgate. His gran Suzy had to resuscitate him in the car, and the nurses and doctors in the health centre had to resuscitate him again in the surgery. An ambulance arrived and blue lighted him back to St. John's where the A&E staff were told to expect a DOA (dead on arrival). When the A&E doctor opened the ambulance door, they could not believe what they were hearing, Aiden was screaming and crying...

Aiden was put into an induced coma and they reduced his body
temperature to preserve his brain and internal organs. Emma and I were allowed in to see him briefly, before he was transferred back to Yorkhill under another police escort. The room was  full of doctors and nurses, and in the middle of all of them was Aiden, in a little plastic cot, hundreds of wires were feeding in and out of him. It was surreal. The work and effort that was put in by all of the emergency services, medical and nursing personnel at Bathgate Health Centre and St. John's once again was amazing, we truly can't thank them enough.

When we arrived at Yorkhill  Emma and I were ushered into a
side room, they told us that Aiden was being put back on a ventilator, they were giving him morphine, using beta-blockers to control his heart rhythm and moving him into ICU (intensive care unit). It was like de ja vu, once again we were being told that he might not make it.

As naïve as it may seem, we never imagined that it could get any
worse, but we were wrong. A doctor told us that after carrying out various tests they had found shadows in Aiden's lungs, which could mean he had further complications. The doctor also said that they had never seen a heart condition as rare as Aiden's before, and that that they would have to do more scans and put a camera in his lungs to get a clearer picture of what was happening. 

This was the worst news that we have ever been told, Emma and I were determined to see Aiden as much as we were allowed to. We went
to the Ronal McDonald hotel just outside of Yorkhill, we gave up our room after a while. We realised that we were not the only parents who had seriously ill children and realised that it could be of much more use to parents who lived further away than we did. We were only a 40 minute drive away, and there were families from England and Inverness there too. The facilities that they provide to families in their time of need is something that money cannot buy, even to this day when I am treating myself, or Aiden and his sister Bella to a McDonalds, I cannot resist giving what little change I have to their Ronald McDonald charity boxes, as this does change lives.

We were at Yorkhill every day, but on my 21st birthday, I walked up to Aiden's cot and there was an envelope taped to it saying "To Dad", it was a birthday card, with "Happy Birthday Daddy" written on it and Aiden's hand and foot print. The nurse assigned to Aiden's care had taken the time to make the card for me, I was overwhelmed, and they allowed me to hold Aiden in my arms again that day. I will treasure that memory and the card for the rest of my life.

When the results from the heart scan and camera came in, they found that the right ventricle of his heart was extremely enlarged and the shadows in his lungs were secretions caused by the RSV virus. This virus had caused his heart to go into overdrive and the reason for the cardiac arrest. Any medical staff, nursing staff or visitors that went to see Aiden had to wash their hands, use alcohol gel and wear aprons.

Aiden was a fighter, he overcame the RSV virus and his heart started to show signs of improvement. As he got stronger, he started breathing
on his own again, and only needed the ventilator for support. He  continued to fight and got stronger and stronger as the days passed, they started to withdraw the morphine, then the ventilator, we could not believe it, he was breathing on his own. We were overjoyed.

Aiden's doctor could not believe the improvement and the progress
that he was making, he said that his story truly was amazing and special. After a couple of months, Aiden was moved out of ICU and into the high dependency ward. The care and attention that the nurses, doctors and wider healthcare team of Yorkhill give to the children in their care and their families is exceptional. There truly are no words that can describe the thanks and gratitude that we have for them.

Aiden is now 8 years old. I wish that I could say that the rest of
his years were stress free, but they are not. Day to day thankfully he lives the life of any normal child, he goes to school, plays with his  friends, dotes on his little sister and his cousins. 

In 2018 Aiden was diagnosed with Neurofibromatosis Type 1 (NF1) a
genetic condition that comes with its own complications. It has been suggested that Aiden's heart problems are caused by his NF1, however although this is a common genetic condition there is little known about its cause or all of the complications that can result from it.

Aiden's health continues to be monitored under the NHS, there are
numerous follow ups with cardiologists, NF1 specialists, doctors and nurses. A recent ECG and echo scan has shown that his heart has started to thicken again and that he has a lump on his septum - the development of tumours in NF1 is common, but they are not sure if this is related or not.

Although Aiden is able to live a 'normal' life, we are still unclear about where his diagnoses will take us, or what this will mean for him
in his future. We are always mindful that there is the possibility of further complications, however, if this should happen, we know that we will have the expertise of the NHS caring for him every step of the way.  I don't know where Aiden finds his strength, but I believe that he will continue to fight any challenge that comes his way.

In July 2017 my brother in law Kenneth and I walked the West
Highland Way to raise money for Glasgow Sick Kids, with the intention of finding some small way of saying thank you to the team of people involved in Aiden's care and recovery. We managed to raise over £600, which was much more than we had imagined. We would like to take the time to thank everyone that was involved in this at this time.

The time comes again where we are asking you to give what you can.

Myself, brother Christopher, sister Lisa, brother in law Kenneth
and my partner Megan are attempting Bros ‘N’ Munros, our aim is to complete 30 Munros. Again, we are hoping to raise money for Glasgow Sick Kids Hospital, as the work that the doctors and nurses have done and continue to provide is priceless, the empathy and compassion that they show is second to none. However, we are also sharing any donations raised with Funny Lumps a Scottish Charity that helps provide support to children diagnosed with Neuofibromatosis (Nf) and their families.

Bros ‘N’ Munros have also teamed up with Sean’s Dad  (Aiden’s Granda) and created the Bros ‘N’ Munros Charity Shield where 6 local teams will compete to win the Bros ‘N’ Munros Shield. Some of these teams already play in their own leagues, and some of them are family and friends that have entered as a team, purely to compete in this event. We are hoping that this tournament is a success and has the potential to
become a yearly event.

Any donations, no matter how big or small, or even a share to raise awareness would be greatly appreciated.

We will post updates of our progress on our Social Media pages;

https://www.facebook.com/groups/brosnmunros/

https://www.instagram.com/brosnmunros/https://www.facebook.com/groups/brosnmunros/

https://www.facebook.com/groups/brosnmunroscharityfootballshield/

https://www.justgiving.com/teams/brosnmunros

https://www.instagram.com/brosnmunros/

brosnmunros@yahoo.com

@brosnmunros

For more information on these charities and the work that they do,
here are the links to their websites;

https://www.glasgowchildrenshospitalcharity.org/

http://www.funnylumps.org/



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About the charity

Tumour Support Scotland

Verified by JustGiving

RCN SC039910
Supporting children, young people and their families, in Scotland, who live with Neurofibromatosis

Donation summary

Total raised
£3,285.54
+ £444.25 Gift Aid
Online donations
£3,285.54
Offline donations
£0.00

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