“This wasn’t the news we hoped to receive. But we are not giving up.”
Little Ariyah, who turns three on June 24, is already battling aggressive rare cancer for the second time. Her journey and treatment has gone viral after mum Amarah Scully, from Bristol, launched a TikTok channel to share her news, and an appeal has gone out for Ariyah to get 100 birthday cards(Image: Amarah Scully)
The mum of a Bristol girl who has a brain tumour has pledged to keep fighting and hoping for a miracle after being told that the treatments currently available are too risky for her to undergo.
But little Ariyah’s mum Amarah Scully said a community fundraising fun day will still go ahead on Saturday, August 22, and fundraising efforts will continue, in order to give Ariyah the best quality of life now.
Ariyah has touched the hearts of people in Bristol and around the world with her journey through battling cancer twice, having a brain tumour operation and being born with a chromosome deletion.
She’s lived much of her life at Bristol’s Children’s Hospital, as well as being treated in Birmingham, and staff say her infectious smile lights up the room.
Her mum Amarah has been documenting her story and treatment through videos on social media, which have gone viral around the world, and earlier this summer, Bristol Live reported on an appeal to get the toddler as many birthday cards as possible to celebrate her third birthday.
To find out more about Ariyah’s fundraising – click here.
Earlier this month, Amarah shared that an operation to remove Ariyah’s tumour had only been partially successful, and she now faced the dilemma of more radiotherapy treatment, which could actually make her health worse.
A new fundraising drive began to raise money for the possibility that Ariyah could undergo high-tech proton beam therapy – possibly in Germany, but In a heartbreaking update, Amarah said even that looks likely to prove too much for her daughter.
“We were told that the next option would be radiotherapy. After everything we have learned about Ariyah and her other genetic conditions, I made the heartbreaking decision that I could not put her through radiotherapy,” she explained.
“Because of Ariyah’s existing conditions and chromosome deletion, we were told that she is at a significantly increased risk of severe complications, including secondary cancers, and that radiotherapy could cause devastating long-term effects and leave her severely disabled with little to no quality of life,” she said.
“We were also told that even if we were to put Ariyah through radiotherapy, the chances of it being effective are unfortunately slim. Knowing that she could potentially be left with significant, life-changing damage while there is no guarantee that the treatment would work made this decision even more heartbreaking,” Amarah added.
Little Ariyah, who turned three on June 24, is already battling aggressive rare cancer for the second time. Her journey and treatment has gone viral after mum Amarah Scully, from Bristol, launched a TikTok channel to share her news(Image: Amarah Scully)
“We also discussed proton beam therapy with medical professionals as a potential alternative. Unfortunately, after discussing Ariyah’s individual circumstances and genetic conditions with her medical team, we were told that proton beam therapy would carry the same significant risks of damage for Ariyah and would not remove the concerns we have about the potential impact on her quality of life.
“We were therefore advised that, for Ariyah specifically, proton beam therapy would not provide the safer alternative we had hoped it might. As her mum, I have to make the decisions I believe give my daughter the best possible quality of life. I could not simply accept that radiotherapy was the only option without exploring every possible alternative.
“We researched endlessly, pushed for second opinions internationally and began looking into treatment abroad, including in Germany. We were hopeful that there may be a treatment available elsewhere that could give Ariyah a chance without causing the devastating effects we had been warned about.
“Unfortunately, after seeking these opinions, we were told that because of the type of cancer Ariyah has, she would not be eligible for the treatment we had hoped for and that, at this moment, there isn’t another established treatment option available,” she added.
“I have also asked for Ariyah to be put forward for any clinical trials that may become available in the future. Science and medicine are changing every single day, and I refuse to stop looking. We will continue searching for anything that could give our girl another chance.
Little Ariyah, who turns three on June 24, is already battling aggressive rare cancer for the second time. Her journey and treatment has gone viral after mum Amarah Scully, from Bristol, launched a TikTok channel to share her news, and an appeal has gone out for Ariyah to get 100 birthday cards(Image: Amarah Scully)
“We have also pushed for alternatives here in the UK. After discussions with her medical team, they have agreed to give Ariyah intrathecal chemotherapy in the hope that it may give us some more precious time with her.
“This treatment is not commonly used in this situation and there is very limited scientific evidence surrounding its effectiveness. Doctors have said they are not confident that it will work and get rid of the tumour that is left but will hopefully give us some time .
“But I have to remain positive. I have every bit of faith that Ariyah will prove everyone wrong. If we don’t have hope we have nothing.
“Ariyah has spent her whole life proving people wrong. She has fought through things no child should ever have to face, and she continues to amaze us every single day. So we are going to keep fighting, keep hoping and keep believing in our miracle girl.
“In the meantime, I will continue looking for other options and doing everything I possibly can to give my daughter the best outcome available to her,” she added.
A fundraiser for little Ariyah, from Bristol, who has a brain tumour, has been arranged at the Downend Tavern on August 22(Image: Amarah Scully)
The community fundraiser is still going ahead. It takes place at the Downend Tavern in Fishponds, from 2.30pm to 10.30pm, with a host of top raffle prizes and a bake sale.
“We will also continue spreading awareness and fundraising, because we simply don’t know what the future holds. Any money raised in support of Ariyah will go towards future treatment if an opportunity becomes available outside of the UK, as well as helping us make as many beautiful memories as possible with our girl while she continues to fight.
“I want to thank every single person who has supported Ariyah, shared her story, donated, fundraised, sent messages, prayed for her, thought about her or simply followed her journey.
A fundraiser for little Ariyah, from Bristol, who has a brain tumour, has been arranged at the Downend Tavern on August 22(Image: Amarah Scully)
“This wasn’t the news we hoped to receive. It wasn’t something we ever wanted to have to think about, and putting these words together as her mum is heartbreaking,” she added.
“But we are not giving up. We will keep fighting. We will keep searching. We will keep raising awareness. We will keep hoping for a miracle, and most importantly, we will keep making every moment count with our beautiful girl. Maybe one day, Ariyah’s story will help change the future for another child facing this devastating disease,” she said.