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Please help me fight for more time with my little boy, Teddy
0% complete
£55,452 raised of £320.5K
1.7K donations
Hi, my name is Jaimee. I'm 28 years old, and a mum to my 5 year old little boy, Teddy. As well as a mum, I am a daughter, a sister, a partner, and a friend.
My whole life changed when I was diagnosed with an aggressive and incurable form of brain cancer (IDH1-Mutant, CNS WHO grade 4 Astrocytoma). I've undergone major brain surgery to remove as much of the tumour as possible, and now going through Radiotherapy and Chemotherapy treatment. Unfortunately, with this type of cancer, even after the standard treatment the tumour will progress and no one can predict how quickly. The median survival rate is about 5 years.
More than anything, I desperately want more time with my little boy. Being Teddy's mummy is my whole reason for existence. And I’m not ready to say goodbye.
But for the first time since my diagnosis, I've been given a glimmer of hope. I've been offered a rare opportunity to participate in the TarGet-D clinical trial at Nationwide Children's Hospital, Ohio, USA, investigating a drug called Olutasidenib for IDH1-Mutant high grade Gliomas like mine.
Finding a trial that matches my exact cancer, mutation and stage of treatment is incredibly difficult. There is no guarantee another suitable option will come at the right time. If there is even a possibility this treatment could give me more time with Teddy, I need to know I tried.
And if taking part can help someone else facing this disease have a better outcome in the future, it would give some sense of purpose to such an awful situation.
Unfortunately, because this trial is based in the US, it is associated with an enormous amount of medical costs and travel expenses. The Olutasidenib study drug itself is provided by the clinical trial, however the monthy required tests, scans and monitoring are not covered for me in America. The medical cost estimate we have received from Nationwide Children's Hospital puts these costs alone at approximately £170, 516 ($231, 624).
Under the proposed arrangement, I would need to travel from the UK to Nationwide Children's Hospital in Columbus, Ohio, initiallly for enrollment and then return once every month, over the course of two years. Those repeated journeys create many additional costs on top of the associated medical costs quoted by the hospital.
We therefore need to raise a total of £320,516 to give me a realistic chance of completing the trial.
This would need to cover:
- The £170, 516 ($231,624) in medical costs including the required monitoring, tests and scans in America.
- approximately 21 return flights between the UK and Ohio
- accomodation for the required 21 x 3-day trips.
- appropriate travel insurance and specialist insurace for somebody travelling internationally with cancer
- any unforseen costs that may arise throughout two years of constant international travel
But we only have FOUR weeks to raise these funds.
The trial treatments required to begin alongside my next stage of chemotherapy, starting in approximately seven weeks. The required associated medical costs have to be paid 21 days before treatment begins, leaving us with only four weeks to raise the money we need to make this possible.
£320,516 is an amount of money I never imagined I would have to ask people to help me raise.
I wish more than anything I didn't have to.
But the alternative is potentially turning down an opportunity because my family and I simply cannot afford the massive associated costs. And when I look at Teddy, I just can't do that. I have to try.
I accept that there is no cure for my cancer, but there is an opportunity for more time - and I need that.
I need to watch my sons smiles and laughter on more christmas mornings. To be there for more birthdays, and to watch him become the young man I've always imagined.
I' m not asking one person to make this possible. I'm asking as many people as possible to help in whatever way they can.
Every donation, no matter how small, matters. And if you aren't able to donate, please share this page. One share could put my story in front of somebody who can help. Please help me reach this goal, and hopefully get more time with my precious boy.
If you'd like to know more information about the TarGet-D clinical trial, you can read here: https://clinicaltrials.gov/study/NCT06161974




