About - Evia S

Story written 2018

Before Evia’s second birthday we noticed she had started to lose her sight. We were back and forth to the hospital where Evia had numerous tests and scans. Evia was transferred to another hospital where they fitted her with a port and started to administer IV chemo. After 18 months of chemo which made Evia sick and lose her hair, she then had 9 months off. They removed her port but at her next scan they had to put the port back in and re-started chemo, which she now has weekly.

Evia had a second round of chemo which lasted for a year. She finished this at the end of January. Evia now has to have regular scans and at the moment she still has her port. Evia has NF1 which caused her to go blind but she refuses to let this stop her.

Update 8th November 2025

I would like to start by saying we appreciate every letter or gift we receive.

Evia is now in Year 8 at a school around 30 minutes away from where we live. She enjoys it and has made loads of new friends at school, but she struggles a bit outside of school as they all live too far away from us. She loves keeping in touch with them on her phone, though.

She is learning mobility skills with her cane to become more independent, which is a bit scary for her at times, but she’s smashing it and learning lots of new routes.

Her favourite thing to do at the moment is make me and her dad a cup of tea using her one-cup kettle.

She is still having regular MRI scans to make sure everything is going well. She’ll have another one before or just after Christmas. She tried her last one while awake but didn’t like it,  it’s a long time for her to keep still (about an hour and a half), so she’ll be going back to being put to sleep for the scan. She also has regular hospital check-ups and blood tests.

Elliott has recently got into watching football with his dad, so they spend a lot of time at Doncaster Rovers. He also plays football on Saturday mornings.

He is currently a primary ambassador for the Junior Civic Mayor of Doncaster and is really enjoying the role.

Elliott is in Year 6 and will soon be moving up to secondary school, which will be a big next step for him.

He loves being out on his bike with his friends.

Update 15th October 2024

Update 28th February 2024

We would like to thank everybody for all our post recently all is very much appreciated.

Evia’s last MRI scan before Christmas came back all clear so all good news.

She is excited and nervous about starting secondary school this year. Am sure this will bring Evia lots of challenges but am sure she is up for the challenge and it will probably scare mum and dad more!

She has recently finished her first job role of being the Junior Civic Mayor of Doncaster where she got to go to lots of events including, her favourite, meeting our new King and Queen and being able to do a speech for them.

Evia interests are: she loves James Arthur, and she does like any kind of music, Harry Potter, Squishmallow toys, Tonie figures and fidgets. She loves anything girlie especially nail vanish and body sprays.

Elliott update.

Once again, thank you all so much for everything you do.

Update 4th October 2022

We would like to thank everyone for the post we have received.

Thank you to everyone that shared the social media post about Evia’s wish to meet James Arthur. She loved meeting him and listening to his concert, she has since been to another one of his concerts.

Evia has an MRI scan booked for October. This is the first time she is going to try it being awake, we don’t  know how she will manage to keep still as she is a wiggler and likes to talk. She is going to listen to her favourite singers. Hopefully she will  manage it, if not they can rebook it.

Evia and Elliott have both settled back into school well.

Update March 2022

Evia would like to say thank for her recent post especially her birthday cards we keep them all in a box and she goes through them every day.

Evia has been very well, at the minute everything is stable she will have another MRI scan later in the year to see how things are going.

She has recently started at Cubs which she loves, she went on her first ever sleepover away from Mum and Dad at camp. Her brother was there so am sure they both looked after each other.

Update 21st June 2021

All stable at the minute, no changes.

Update 8th April 2021

Evia would like to say thank you for all her birthday cards and gifts, she really enjoys the letters and listening to what people have been doing.

They both really enjoyed the Easter Zoom party.

Update 8th February 2021

We would like the thank everyone for both Evia and Elliott’s Christmas gifts and cards, they’ve loved every single one, putting each Christmas card up in their bedroom.

Healthwise  Evia is doing well, stable at the minute.

Update 12th July 2020

Nothing much has really changed health wise we are still waiting for Evia’s next MRI date to come through. Due to the virus it has been delayed, she was due in February time, so hopefully it will be soon.  We did manage to move house around 3 weeks ago, which is loads better, as we now have a bigger garden, which has helped loads.

Update 22nd April 2020

Evia and Elliott would like to thank everyone for their letters and gifts they have received. Evia has kept all her birthday cards she going to put them up in her bedroom when we move as lots of them are tactile. We were due to move house before the lockdown started which has been put on hold for now.

Evia health wise she has now had her port took out which am so pleased happened before all this virus started. She was due a MRI scan in February, we are waiting for an appointment hopefully be soon. She is getting really good at her braille and now she teaches me.

Update 9th September 2019

Evia and Elliott would like to thank everyone for the cards and parcels they have been receiving. They really enjoyed the post pals party, it was great to meet some other post pals families and everyone involved with post pals.

Evia has just started year 2 and is settling in well. She has recently had a MRI scan which showed everything had stayed the same, which is good news. We are currently waiting for an appointment to remove her port which will hopefully be soon, she will then have a MRI every 6 months unless something changes or we are worried.

Evia’s brother Elliott has just started reception, we have had a few tears at drop off, but I am sure it won’t last long, he enjoys it once he goes in.

Update 16th June 2019

We would like to say thank you for both Evia and Elliott’s monthly parcels and their fortnightly letters and everyone else who sends post.

Evia had one hospital trip this month for her ears. We were getting them checked and they needed cleaning out but she became a little anxious and wouldn’t keep still, so we had to have a trip to theatre to go to sleep so they could be cleaned. They had a good look at the left ear that was causing her problems but they said it all looked ok. So hopefully at her next scan which is in July, all should be clear and if the tumour has stayed stable we should be hopefully getting her port out soon.

Thank you once again, hopefully see lots of you at the party.

Update 28th March 2019

Evia and Elliott would like to thank everyone for their cards and gifts they have been sent. Evia received loads of cards for her birthday which she loved, she still plays with them now asking me who they are from.

Evia has recently just had a MRI scan,  at which they  said the optic gilomar has stayed the same as last time, which is good news. They did find something on her left ear which is new, they are not too concerned about it at the minute, but want to re-scan her in 3 months. Then she may have to have a operation on it, so they have decided to keep her port in for a while longer, we were hoping it would come out this time.

Update 28th January 2019

All of us would like to thank you for all the Christmas cards and gifts we have received. We have had lots of fun opening them all.

Evia is doing well at the minute. She had another ear test which they said has improved since last time. She has a MRI scan due in March – hopefully all will be ok and we can then talk about having her port removed soon.

Update 18th September 2018

Evia would like to thank everyone that has sent her letters and gifts, she loves feeling them all and listening to us read them to her. We will keep them all in her craft book. She can now remember what some of the letters and cards say and who they are from.

She recently had a MRI scan which was good news, they said her tumour is stable but they are keeping her port in at the minute just in case, as they took it out too early last time and she needed it put back in.

We have since learned that the tumour has damaged the nerve which tells her when she is full and this explains her obsession with food. She has just got a trike so we are hoping this will help with the exercise.

She recently had her ears tested they are concerned with her left ear, so may need grommets or a hearing aid in the future.