Nia's Story

Our beautiful Nia was born on the 2nd of February 2017, to her loving parents Emillie and Shane Shibambo. She was the youngest of our three children, sister to Keelan and Elisa. She completed our family.

She was the most amazing, beautiful little girl and everyone who met her fell in love with her. She was truly the most beautiful, funny , loving .. .incredible girl.

We felt as if we had won the lottery of life, we had everything we ever wanted and was so excited for our future as a family. We know true happiness and heartbreakingly we have lived our happiest days … as we will never be whole again , our lives forever changed , our hearts broken … for what was about to happen was every parents worst nightmare…

 On the 18th of September 2023, Nia aged just 6 was diagnosed with a brain tumour.

She had been having on/off headaches for just 11 days which was due to fluid pressure building up in her brain as the brain tumour was blocking it from draining. Nia was taken for emergency surgery to drain the fluid and we were told she had a tumour on her brain stem. We knew deep down what this meant but waited for all the facts from her oncologist and surgeons.

In the days that followed Nia had a detailed MRI , shunt surgery and a biopsy. We were then told our worst fear was our reality … Nia had DIPG/DMG a rare and aggressive brain tumour with a prognosis of just 9-12 months.

The only treatment is palliative radiotherapy. How could this be?!

In 2023 how could treatment have not progressed at all since the 70’s?!

Nia was put on steroids while we were in hospital to reduce swelling  , while waiting to be moved to Bottle Cottages in Birmingham to begin 6 weeks radiotherapy. She was happy as long as she had mummy and daddy by her side and had an endless supply of caramel frappes from the BCH cafe.

The following week we moved into Bottle Cottages a charity run accommodation at QE Birmingham and Radiotherapy began. 30 rounds of radiotherapy Monday -Friday for 6 weeks , that’s 30 general anesthetics. We were so worried about how Nia would feel being put through it all, but after a few days she got used to the routine and got excited to see her team every morning. We are so grateful that we got to do radio this way staying in the cottages. Once she had her radio in the morning we had the rest of the day to do whatever she wanted. We went to Cadbury World , Sealife centre , the cinema and although we were living a nightmare we got to be in our own little bubble of just us. For that I am so grateful to the Bottle Cottages, for allowing families to stay close to the hospital without being inpatient on the ward, and our other children could stay with us too when they weren’t at school.

This became our new normal and it felt like we were actively doing something for our baby. When the end of the 6 weeks came it was incredibly difficult to go home, because the reality was that was end of treatment...there was nothing more they could do and we were told to 'go home and make memories'. It was very surreal and scary , as we had gotten used to the safety of having her team so close by.

We went back home to Rugby and Nia had appointments at BCH most weeks to monitor her. We were told that Nia’s tumour mutation was the H3K27M positive.

Late November Nias oncologist spoke to us about the possibility of Nia starting a pre trial drug from the US, vandetanib paired with UK drug everolimus. After many discussions about the science behind it etc we decided to go ahead, and Nias oncologist began the process to try to get these drugs on compassionate grounds....but it was a long shot.

We lived in our bubble at home soaking up every moment with Nia, we got through by not thinking beyond  tomorrow and not thinking about what was coming. We spent everyday doing whatever Nia wanted if that was cuddling and playing Roblox together, going swimming or going on days out to the safari park etc. By January time Nia was feeling well and she was weaned off of steroids as the post radio swelling had subsided and radiotherapy successfully shrunk the tumour temporarily.

Nia turned 7 on the 2nd of February and we celebrated with a stitch themed birthday! She was a stitch superfan! She had the best day and had so many stitch presents. She was so happy.

Unbelievably Nias oncologist was successful in getting Nia on the pre trial. She began this in February and in true Nia style she surprised everyone with being able to swallow tablets with no issue at all, as they only came in tablet form and we were so worried she wouldn’t be able to!

The following months Nia was very well and it was hard to believe she was living with a brain tumour. (The photos are all from this time ) She was so full of life , so happy and above all so so loving. She wanted to go back to school (if mummy and daddy could come) and we went in to school for 2 afternoons a week to spend sometime with her friends, and do some crafting and even forest school. Acorns hospice outreach team were visiting once a week at home to do some activities and baking etc with her, and loved these sessions. Her quality of life remained very good and she had minimal tumour symptoms.

In May we went on a family holiday to Wales, we had a wonderful time as a family and did lots of swimming and ate lots of crepes! Nia’s favourite. During this holiday we had noticed that Nia was a bit more tired than usual, and was using her wheelchair a lot more but we put it down to doing lots of swimming etc.

I think deep down we knew things were changing although she seemed so well. Nia had her routine MRI and a week later in the last week of May, we were told the devastating news that Nias tumour was growing and the pre trial drug wasn’t slowing it down

We were realistic with expectations of the drug, it gave us a glimmer of hope that it may slow tumour growth and we would have more time... we are devastated it didn’t but we do believe it contributed to Nias quality of life being so good. Nia began taking steroids again to reduce any tumour swelling.

Nia’s favourite place to be in this world was home. With her family , with endless cuddles and kisses. So we decided that all her care would now be at home with her oncologist appointments over zoom so we still had support from BCH and their amazing team alongside the incredible palliative community team. They came in daily to check in on Nia and she got used to them coming in and it was part of our routine.

Over the following 6 weeks we did lots of days out to farms etc , played Roblox , painting , colouring ,swimming etc. She loved being cuddled to sleep and would nap on mummy’s chest when she would get too tired. Mummy will treasure them moments forever.

On the 17th of June the community play team surprised her with a visit from stitch to our house! Nia was so so happy and had the best day! She danced with stitch and laughed so much. He even brought her some presents!

Just 4 weeks later on the 17th of July 2024, Nia fell asleep peacefully at home surrounded by her loving family, where she felt safe and loved. This was just 10 months after diagnosis.

Word cannot express the pain , we have tried so many times to express it but nothing feels enough.

We are heartbroken, forever changed and will forever long for her… to be loved by her .. she was the most incredible beautiful girl and we are lost without her. No one should ever have to loose a child.

OHANA

“Ohana means family, family means nobody gets left behind or forgotten “

We have chosen to share her story on Abbie’s Army because we do not want anyone else to go through this. There needs to be more research and more treatments for children like our Nia. We want to keep Nias memory alive and we will forever fight for a cure.

Thankyou for reading.

---

 Donate Now, and Help Us Find a Cure for DIPG

Abbie's Army are committed to funding critical research to fight DIPG, the deadliest childhood brain cancer. Your donation, no matter the amount, helps give hope to families and brings us closer to a cure. Please consider donating today so that no other family has to face this unimaginable loss.