Charity

Molly’s Story

The story behind the challenge.

Molly was born on 23rd June 2008, she was and still is to us absolutely perfect.

However, on the 28th February 2018, we took Molly ice skating and had a fantastic time, we love doing things as a family together. Afterwards we went for tea at Old Horns in Bradfield and as Molly was reading the menu her speech slurred and the left hand side of her face drooped down and I remember saying “Oh my goodness she’s having a stroke” we took Molly to the Sheffield Children’s Hospital where they examined Molly and told us she was too young to have a stroke!

The Neurologists were involved and did lots of tests on Molly including an EEG which measures brain activity. They then sent her home telling us if anything gets worse to take her straight back.

On the 8th March Molly had a really funny turn. Sarah rushed her back to the hospital after further tests again they told us Molly was suffering from ‘Hemiplegic Migraines’ despite not having headache! This didn’t really sit well with us, we felt like the doctors were missing something, our little girl was really poorly.

Over the next few weeks we were back and forward to the hospital with various doctors again giving us different diagnosis’ we went from Ticks to Postural Tachycardia Syndrome which attacks the nervous system, then Non Epileptic Attack Disorder! again, none of this sat right they were mis-diagnosing her, as a parent you just know.
On the 4th April, Molly came downstairs and said her heart was pounding and sure enough it was, we could see it in her neck. We sat her down to see if it would calm down, but it was just getting faster and faster! I couldn’t count it! So, after a trip to our GP we were sent straight to A&E, and we were rushed through to the Acute Assessment Unit where they hooked Molly up to the heart monitor machine. It was flashing red and beeping so crazy, we were trying to calm Molly but as I looked at the machine her heart rate was over 200bpm! The nurses came as well as the doctors, there were over 10 around her bed! Sarah and I just looked at each other and we both knew this was serious. They gave Molly a syringe and asked her to blow into it, they then quickly grabbed a bucket of ice and plunged her face into it, obviously this scared Molly and wasn’t helping the situation at all, her heart was continuing to get faster! Another doctor came and immediately took the brakes off the bed and took her into a separate room. At this point Sarah and I were petrified, the cardiologist said they needed to administer a drug to stop Molly’s heart so it could restart and hopefully sort the rhythm out!

They put a catheter in Molly’s hand and administered the dose of ‘Adenosine’ it didn’t work!!!! They said they would give her a second dose, the heart monitor was beeping so loud and hit 256 bpm, as the second dose began to work, her heart rate began to drop, we stood holding her hands either side as we saw the redness of her body drain to white and our biggest fear was yet to come as the monitor hit 0, it seemed like a lifetime for her to wake up again, Molly took a big breath and the monitor began to beep again and her heart was at a more stable rhythm. The doctor asked if Molly was okay and she said she came out of her body, saw us standing there and went back in!!!! Sarah stood outside for a few seconds to compose herself, but it hit us both so hard, it’s the scariest thing we have ever witnessed.

Those doctors just saved our little girls life! Molly was admitted onto the ward for monitoring and was started on a heart medication called Atenolol, which she still takes now. The doctor told us Molly’s condition was called Supra Ventricular Tachycardia (SVT)

The past 18 months have been horrendous, yet Molly remains positive throughout. She has missed quite a bit of school through obviously being in hospital undergoing tests as various other symptoms have arisen. As parents we don’t want Molly on medication for the rest of her life, we wanted to see if there was something else that could be done to help Molly.

On the 7th May this year we met with a Cardiologist at Leeds General Infirmary. Sarah and I were amazed by him and the way he spoke to us and Molly, he explained that after careful review of all Molly’s ECG’s he could see she has a condition called Wolff Parkinson White Syndrome, which she was born with, she has extra electrical pathways in her heart and this has been causing Molly all these problems, it just went undiagnosed for so long!

Dr Hares is going to perform an Ablation procedure where he goes up through her groin and carefully tries to pinpoint the extra pathways and burn them off, if he is able to do this, it will cure Molly of this condition, if it’s a little more complicated he will fit her with a pacemaker and this procedure has now been booked for November 7th 2019.

Back in June this year Molly suffered a blackout after a day out at Rother Valley and then the blackouts increased to 18 a day, this wasn’t the first time she presented with these for want of a better term “attack”. Due to these attacks she was placed in ICU where she stayed for a number of days while they ran more tests. Including a heart echo, a 24 hour ECG,an MRI and CAT scan and EEG. Molly was not only presenting with stroke symptoms again but also symptoms pointing to a brain tumour (we only found this out Wednesday!) However, it turns out she has a condition called Cataplexy with Narcolepsy meaning her body momentarily shuts down as her heart isn’t working properly, all this stems from the initial Stroke last year. Everything and anything can be a trigger but the specialists are hoping once the heart operation has taken place these attacks will go away.
To us, Molly is absolutely incredible, she is very strong and so brave and smiled throughout, even when she’s been prodded and poked it’s become second nature to her, which you never want for your child, but she remains such a positive little girl. She has had such an ordeal and so much to deal with including taking her SAT’s very this year. We have received her end of school report and despite everything has received top marks in all lessons and we couldn’t be prouder. Molly started High School and received the highest number of achievement points in her year during the first half term.

Molly is due to under go her operation this coming Thursday in Leeds. We are hoping everything goes to plan and we can hopefully move on as a family. So for those wondering what happened to my planned Theo’s Endure’s Challenge it was due to take place this coming weekend but obviously Molly needs both her parents after her operation and I was unable to find alternative dates in 2020 so thats why I decided on the Road Warrior challenge

So as you can imagine, the challenge I have decided to do needed to be an Epic one, saving our daughters life changed ours as parents, and for me running is what I do and hopefully I can raise lots of money as my way of appreciation for what the doctors have done for Molly.

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