Skydiving to raise money for HEARTLINK children’s charity

Hi guys! Next month my husband will be taking on a charity skydive! Please take a moment to read our story on why we would like to raise money for the Heart-Link charity.

Trigger warning: what I share may be distressing for others.

Today marks a year as the start of the worst days of my life to date.

I’ve never shared the full story of what happened to Elijah, I wasn’t sure If I’d ever have the strength to revisit the days in detail but if it helps at least one person recognise symptoms then that’s ok.

It started on the 14th April, Elijah complained his legs were aching a little. We’d had a busy day, shopping and exploring so I told him we would see how he got on. On the 15th April, Elijah woke up & complained his throat was hurting so I made a GP appt for that day. The GP explained his lymph nodes were swollen and he looked to have tonsillitis- antibiotics were prescribed.

Elijah was getting worse, it was painful for him to move his neck and he didn’t want to get out of bed or talk, so I took him to be seen again as I was exceptionally worried.

I won’t share any more about this snippet for the time being, now I have a little more strength,accountability will need to happen to those involved.

The next day, for the fourth time in 3 days, I asked for Elijah to be seen, I begged for my voice to be heard. I rushed him to our local paediatric emergency unit, in the hopes of answers this time.

Within 5 minutes, a lovely nurse showed genuine concern for Elijah’s condition and realised this was more than a bad case of tonsillitis (thank god!) but unfortunately Elijah collapsed. He was rushed to the rhesus unit and when I tell you I’ve said felt more excruciating pain and worry than in the following moments.

Whilst around 8 specialists rallied around & worked on Elijah, I was assisted to the waiting room by the care nurse as I was exceptionally distressed, vomiting, collapsing and quite frankly wasn’t in a good state. My incredible husband held Elijah for the entire time and didn’t leave his side. They wanted Elijah to rest so made the decision to put him into an induced coma. He asked us to help him before his little eyes shut, it was heartbreaking. Even writing this now and reliving that moment, leaves a feeling of absolute dread.

For around 8 hours they were attempting to stabilise Elijah’s heart- shocking his heart and multiple IV medications were not helping at all. He wasn’t breathing and his heart was at rapid speed. They thought his heart was going to fail.

They quickly made the decision that our hospital was not equipped to deal with a child so sick. We were informed that we needed to go to Leicester intensive care unit that dealt with heart problems. Elijah had never had a heart problem and they couldn’t decide if it was happening due to illness or if his heart had developed an issue. Before doing so, they’d need to check if Elijah had brain damage for the time he had stopped breathing for long periods.

When the specialist team had arrived from Leicester to transport Elijah, they told us they didn’t think Elijah would make the journey but they needed to try so they decided not to CT scan as brain damage was the least of their worries at this point.

Unless you’ve been told you may lose your child, you will never know the feeling. I’m sure my gut wrenching screams will sit with me forever.

We were advised to make our own way to the hospital as the drive may have been too distressing for us but after kissing Elijah’s little forehead and speaking to him in his sleep, for the brief moments I had, I decided I wanted to be there with him. Imagining my son spending his last moments pulled over on a bypass without me just weighed heavy on my heart and I needed to be strong for him. At this point, I’d like to thank the rhesus team at chesterfield as they spent hours trying to stabilise Elijah and the team were incredible.The ambulance driver raced to Leicester and although it felt hours, he got us there so quick. What was supposed to take over an hour, took a lot less. WE MADE IT and for the first time in hours I think I managed to breathe for a moment.

Elijah remained in intensive care for a long time, under full sedation and with ventilation. As the weeks passed by multiple tests took place trying to figure out what was wrong with Elijah.Every day he was here, felt like a blessing and Joe was my absolute backbone throughout.

Elijah was luckily granted a specialist transfusion from a panel that would hopefully speed up his recovery.

We eventually found out that our poor boy had been battling with Tonsillitis, Covid PIMS, Sepsis and a rare syndrome- Guillain Barre Syndrome.

Elijah eventually was able to be taken off sedation and removed from ventilation and they discovered he was still unable to move his neck, legs arms or back, his eyes were crossed in to the middle and he had limited vision which changed to double vision.

At that point they believed he may have had a severe arthritis attack but eventually discovered the GBS from specialist tests.

To have GBS at such a young age is so rare but for some reason it’s happening more and more. (& no Elijah had not had a Covid vaccine as I know this is becoming a new contributor to cases) We will never know why it happened, but it did.

Elijah had to learn how to move again with strong medication and a lot of physiotherapy. It was a long road to recovery that we are still on to this day. Elijah has worked harder than anyone I know to get better. To have such strength at 5 now 6 years old was nothing short of miraculous. I am so proud of him and the person he is. They thought he may struggle for the rest of his life but he’s out here doing his best every single day and has so many passions and hobbies. I may be biased but he’s truly the most loving, kind hearted and gentle soul you’ll ever meet. Everyone who has met Elijah pays compliments on his old and beautiful soul. Why he was given such struggles in life I will never know. What I do know is that he is the biggest fighter and hits back at anything thrown his way. Our very own superhero.

I could write a thousand page story of more details but I imagine everyone gets the picture.

So If you’ve got this far I’d like to take a moment to share symptoms of sepsis and GBS:

Sepsis (not limited to these symptoms) Respiratory Issues

Skin Changes

Neurological Changes

Fits or convulsions

extreme lethargy, difficulty waking, or a weak, high-pitched cry.

General Symptoms:Abnormally cold to the touch, fever, low temperature, or changes in mental state.

Other Signs:Difficulty feeding, repeated vomiting, or a lack of urination (especially in children under 5).

symptoms of GBS;

Tingling and Numbness:

Muscle Weakness: Can range from mild to severe paralysis

Loss of Reflexes

Excruciating Pain

Breathing Problems

Facial Weakness

Other: rapid heart rate, heart problems, low or high blood pressure, and bowel or bladder control issues.

(Guillain-Barré syndrome (GBS) is thought to be caused by a misdirected immune response, where the body's immune system mistakenly attacks the peripheral nervous system. This typically occurs after an infection, either bacterial or viral, but the exact cause remains unknown)

Vaccinations can also cause GBS

One takeaway I want everyone to have from this post is whether it’s GBS, sepsis or something completely different: ALWAYS TRUST YOUR GUT! You may not have a medical degree but you know your child best.

In May, my husband will be doing a charity skydive for Heartlink who supported ourselves and Elijah whilst in hospital. If you would like to donate we’d be so grateful.

When arriving we had the pleasure of meeting with a heart link worker who told us we would be given an apartment to rest (unfortunately overnight sleeps were not permitted due to the nature of the ward) our meals would be provided and we didn’t have to worry about any financial aspect. They brought the most beautiful cuddly bear and placed it next to our little boy in a coma and was given so many resources and offered counselling.

Heart link have paid for: waiting areas, parent lounges, playrooms, and quiet rooms (this was so important to us as whenever I broke down, needed support or an area to calm down, I could use this) , as well as equipment for cardiac children and research/training for medical professionals.

When Elijah woke up, (thanking our lucky stars) he was given gifts, a beautiful charity t shirt and was surrounded by love and kindness from the workers. He snuggled his bear and took it around in his wheelchair wherever he went,

I can’t thank them enough for what they do for very poorly children and families.

Never in a million years did we expect it to happen to us and we pray it never happens to anyone else, but when it does- I would like to think we’d helped raise money for this service to continue for other families.

SO….

as the year has passed we would love to repay the favour and give back some kindness to the charity that was so kind to us. Next month my husband Joe will be taking part in a charity skydive. The skydive will cost around £350 and the rest will be going directly to heartlink. We hope to raise as much money as possible so Elijah can proudly visit the hospital and hand over the money.

if you cannot donate, which is completely understandable please share and spread the news far and wide.

The Dawsons x