Neuroscience ward LGI

Reggie's story started out like a lot of kids with medulloblastoma, sickness, fatigue and balancing issues. This isn't where I'd like to focus this fundraising efforts on, however.

The night we were sent down to the CAT unit at Leeds LGI we knew we were in for an unthinkable and emotional night. Within the next 6 hours and the help of some basic neurological tests and a CT scan, the news of a brain tumour were as anyone can imagine; hard hitting, traumatic and simply devastating.

We felt alone, lost and scared! As Reggie was transferred to ward L52 (Neuro ward) we were allocated a side room in the early hours of the morning and left to process our feelings. Luckily for us, we were welcomed with the overwhelming love, care and reassurance. That is exactly what we as parents needed.

Over the next 30 days, Reggie underwent a 12 hour brain surgery, diagnosed with Posterior Fossa Syndrome (mutism) and received the devastating diagnosis of cancer. He had to relearn how to open his eyes, use his arms, talk and eat. He is still continuing to relearn how to sit unaided and walk.

Let me me say this, without the beautiful souls that call ward L52 their place of work, we simply would of spiralled. Even though we had a support network outside with family and friends, the nurses were our first life line to hope, a shoulder to cry on, a source of reassurance and they really know what to say and when to say it. We couldn't praise them all enough.

But what has really upset set us, is the fantastic team on ward L52 have to provide love and care to kids with life threating issues and support the highly emotional parents, and they do this whilst battling to get resources. These resources have an effect on everyone on the ward from toys for the kids, fans on hot days and even monitors for nurses.

Unfortunately, the neuro ward do not get the same huge funding as oncology (which is Reggie's new home) so we want to make it our mission to be a helping hand for the incredible team, by providing items that they need when they need it.

This funding will relieve stress for the team on the ward, provide new and exciting toys for the children, more sensory toys for the play room, funding to get new items to help nurses do their jobs and anything else the staff may need. Children admitted to L52 again can have life threatening illnesses and for some children, they're there for an unimageable amount of time. Imagine spending not one but two consecutive birthdays inside the four hospital walls without discharge. That's how long some have been there.

During Reggie's stay, he met with so many professionals from surgeons, to consultants, to doctors, to nurses, to physio therapists, to occupational therapists, to speech and language therapists, to play workers, to health care assistants, to student nurses, to housekeeping staff. Each and everyone were amazing and each could probably benefit from additional support through funding.

A few items already on a growing list are:-

Mobile gaming console

Tablets

X rocker gaming chair

Fans for hot day for each bed

Toys and sensory items

Thin air sleeping mattress for the parents/ new comfortable chair beds

Air Fryer (approval needed)

Parents pack (toothbrushes, shampoo, body wash, etc.)

Vouchers for SaLT to continue providing food not supplied whilst going through therapy stages.

Anything you can donate will help go towards children who are dealing with uncertain, scary, sometimes traumatic times. With your help, we can bridge the gap that the neuro ward experiences with funding issues.

Thanks for reading

Reggie's Parents