Raising funds for Callum’s family

With permission from Callum’s mum I just wanted to post an update.

Since I first posted Callum took a turn for the worse and was admitted to Whiston hospital and put in HDU.

He was put back on midazolam and the palliative doctor from alder hey came to see Callum’s family.

It was the family’s wish for Callum to be brought home so he was brought home on a palliative ambulance and is now at home where his family can be with him and care for him.

I am still raising as much as I possibly can for Callum’s family at this unimaginably heartbreaking and stressful time.

I will be posting the raffle this evening if anyone would like to still add a prize.

The go fund me page is also set up and any funds go straight Callum’s family to help them in any way possible

Please share ❤️Hi my name is Kelly,

I am setting up this fundraiser to help Callum and his family get a garden they can spend time together in.

After being moved to last minute accommodation that was specially adapted for Callum after he had a seizure leaving the family unable to live in the house they had already made a home for their family.

unfortunately the garden is not a garden at all

and with the family having to spend all of their time at home caring for Callum who needs 24 hour care

I think the very least they deserve is a space outdoors that they can enjoy.

Callum first presented with epileptic siezure at the age of 8, he was taken to whiston hospital but they couldn’t control the activity.

Callum was emergency transferred to Alder Hey Children’s Hospital where he was put into an induced coma.

After extensive tests they found Callum had mitochondria POLG1 gene mutation. Which is a progressive life limiting condition.

The medication that Callum was put on controlled his siezure activity and was fully controlled for 7 years.

Christmas 2022, Callum started to develop a different siezure and was taken to Whiston Hospital to try and control the siezure, the HDU ward in Whiston couldn’t get them under control so Callum was transferred to Alder Hey.

Callum started to deteriorate whilst in Alder hey presenting with full body siezures, Callum was transferred to the HDU ward but continued to deteriorate.

The ICU doctors made the decision to intubate Callum and put him on very strong medication to control the activity.

Callum was inducted into a medical research study and tried on different medications to try and stem the activity.

Once Callum was relatively stable he was transferred back to HDU and subsequently up onto a ward.

After 14 weeks in hospital Callum was allowed to be discharged on a large amount of anti epileptic drugs and a kytogenic diet. Callum has also developed a respiratory problem which shows through the night his oxygen levels decrease whilst asleep and is needing oxygen on while he’s asleep.

Callum’s mobility has been severely affected by this latest hospital admission and his mental health to.

It’s has affected both of his parents mentally and physically as he is on a strict medication timetable to keep him relatively stable. Medication is given all through the day and night to make sure he stays at home aswell as having to prepare and give him his kytogenic feed which is given through a tube into his stomach.

Callum has a younger sister and it has emotionally affected her seeing her big brother so ill.