Kayleigh Westwood
#RUNNINGWITHPOPPY for her epilepsy
Fundraising for Oxford Hospitals Charity
Story
Thank you for visiting my page ♥️
Hi my names Kayleigh and I’m running OX5 this year. Ox5 is an annual event held at Blenheim palace. It’s a 5mile run raising money for the Oxford children’s Hospitals Charity. This charity is very close in my heart because the amazing work that the charity do for the hospitals both the JR and Horton. Our 2year old daughter poppy spends a lot of time in hospital due to multiple seizures, some lasting upto 40mins, she has to go through endless test including blood tests, eegs and more recently an mri. We can stay upto 10days at a time and sometimes that can be monthly this is incredibly hard as I have two older children and being away from them for such long periods of time is very difficult (thank god for FaceTime) , with out the hospitals charity we wouldn’t have a bed to sleep on food provided for us and the up to date equipment that they use as well as the endless supply of peppa pig dvds. As a sign of our appreciation I aiming to give back as much as I possibly can via fundraising and spreading the word. So far I have raised an incredible sum of money via friends and family’s generous donations. Please keep donations coming for this amazing charity and help me say the BIGGEST thank you I possibly can
Just an insight to daily life with poppy- she has to be watch 24-7. She’s seized watching peppa jumping up and down to the puddles, she’s seized in my arms more times than I care to remember, she’s seized in the car, in the doctors surgery, in her bed and ours and in the bath , There’s no warning at all. This is so very restricting on us and a very big ask of asking people to watch her whilst we go out for a few hours together. We’re very grateful to the family that watch her to make this happen as and when they can.
We carry rescue medication with us everywhere we go! Two doses as some times the first dose can fail. These are her life line in a seizure
I just wanted to add with each seizure poppy misses an incredible amount of time at her amazing nursery this effects her massively as she loves going and exploring and learning new things. We’re so lucky to find one that completely understands and will continue you to hold her place even though she’s hardly there. ❤️ Thank you little monkeys
They tell us every time poppy seizures that it’s the same as running a marathon and the recovery is the same. So mummy’s running with you baby girl. I’m with you every step of the way
#runningwithpoppy
Yesterday 29th jan we got Poppy’s diagnosis of epilepsy. (Hard to swallow) even though we knew it was coming. We will start treatment and hope these help keep them at bay and we can all move for and live a relatively normal life if there is such thing 😉 she will be reviewed 6mthly and under a new specialist at the jr in oxford
♥️Just in case anyone was in ANY doubt, I absolutely adore my daughter . She is the most remarkable, beautiful, perfect little human with the best personality EVER
But that doesn’t stop the grief that comes from parenting a child who is, simply put, medically fragile.
I remember the day of Poppy’s first seizure vividly; the moment when my instincts suddenly screamed that something was very, very wrong.
A year and half later, our world shattered as her first of many diagnoses was gently given to us. But we dared hope that medication will stop the seizures.
I have never come to terms with seeing my child have a seizure and feeling utterly helpless to do anything.
Day to day, I’m happy and bubbly, chatting away to anyone who’ll listen, with at least 4 different projects in progress at any one time.
It’s a defence mechanism; if I stop, I’ll likely as not start overthinking and descend into the abyss of anxiety and depression.
As someone who already has an anxiety disorder (PTSD), I’m right up there at the top of the ‘high risk’ group for relapse.
Over March 2019, I took time out to rest. I went to bed as me, and woke up a totally different person. Barely able to get out of bed, unable to eat, consumed with anxiety, grief and pain.
Grief for the life we may have had, the milestones my baby hasn’t reached. The many times I’ve held my baby’s hand and desperately wanted to put myself between her and death, to just give her a chance to live.
The way you feel your heart breaking as you hold your child still for a painful procedure as they fight to get away, pleading with you to let them be.
It’s how when my poppy is in a seizure I only notice that I was holding my breath when he starts to breathe again.
Its grief for the strain my marriage is under, continuously. Constantly being on high alert for the next emergency leaves little time for being a couple, and I miss the time we spent together when life was less complicated.
Is it any wonder SN parents often struggle with mental health?
Grief, anxiety and depression are a triad of cruelty. Parents of medically fragile children are engaged in battle on a daily basis for services, support, equipment, acceptance.
Poppy’s birth remains the greatest experience in my life; he reminded me why life is precious and I knew from the moment she arrived that there was nothing I wouldn’t do for that little girl.
The rewards and joy that come from being her Mum are stratospheric, but the anxiety and grief are always just under the surface.
No matter how good the good times are, there is no denying that the lives we are living could not be further away from what we dreamt they would be.♥️
https://www.oxfordmail.co.uk/news/18171311.mum-running-ox5-daughter-poppy-suffers-seizures/
Oxford Hospitals Charity supports the different departments and wards of Oxford University Hospitals, helping to provide the best medical equipment, research and facilities for our patients and staff. Your support helps transform care across all our hospitals, including: The John Radcliffe - Churchill - Nuffield Orthopaedic Centre - Horton General and Oxford Children's Hospital.
