FIGHT4AMANI #Give2Tell2
Donation protected
FIGHT4AMANI ~ #Give2Tell2 #AmanisArmy
We are raising money for potential life saving treatment in Germany for our beloved daughter Amani.
The lives of our whole family changed on Amani's 22nd birthday on 29th April 2020 when she collapsed at home after suffering her first ever seizure. Amani was rushed to hospital and within a few hours was diagnosed with a brain tumour.
Amani spent 4 days at L & D Hospital before being transferred to Queens Square Hospital in London where doctors took a biopsy. Amani spent 12 long days in hospital without her family by her side due to the Covid pandemic. She had to endure numerous scans, brain surgery that left 15 staples in her head and difficult conversations with medical professionals all by herself. She coped amazingly well and was finally discharged on 10th May 2020.
Two days later we received the results of her biopsy - the worst news yet! The biopsy revealed a cancerous, incurable tumour called Glioblastoma Multiforme, Grade 4 (GBM4), H3K27 mutation. This is a highly rare, aggressive tumour called a Diffuse Midline Glimoa that is particularly resistant to conventional treatment. Due to the position and depth of the tumour doctors concluded that it is also inoperable.
The treatment options for this particular tumour are very limited. However, Amani started the standard treatment of 6 weeks of radiotherapy combined with a low-dose chemotherapy drug on 26th May 2020. Amani also tested positive for Covid-19 at this time so the chemo part of this treatment had to be delayed for over a week. These 6 weeks were the most gruelling any of us have ever experienced! Amani also had to deal with some additional bad news in her own personal life which left her broken beyond all comprehension. It was utterly heartbreaking to watch our daughter's decline physically, neurologically, mentally and emotionally.
Amani is an inspiration to her 2 younger sisters. She always had a complete zest for life, with an unique and charismatic character which had the ability to touch the lives of everyone she met. She always had a passion to care for others and volunteered throughout college for a local organisation, FOBE, to help children with special needs. She performed exceptionally well in her A-levels and secured a 1st class Honours degree in LLB Law from the University of Leicester. Her dream was to continue to help others and become a social worker. She commenced a 2-year Masters in Social Work at the University of Bedfordshire in Sept 2019 and her tutors expressed how she was showing great potential before her diagnosis. So, it has been very distressing for Amani's entire family and friends to witness her change so much during the 6 weeks of radiotherapy.
In early August, Amani began her first round of intensive chemotherapy but at the same time she also started experiencing bad temple pains and unsteadiness. Amani's oncologist decided to send her for an MRI scan which unfortunately revealed that Amani's tumour had grown despite the treatment so far and it was advised to stop the current chemo. Again, we were all utterly devastated by the news but even more determined to fight on.
We have discussed our treatment proposal with Amani's medical team and it has been agreed that in light of the very limited treatment options available in the UK, we will do the following:
1) ONC201 - a Phase II trial drug designed to fight the exact mutation of Amani's tumour that has shown very promising clinical results. The drug alone will cost £4,000 per month and, if effective, will require long term use. The treatment for one year's medication, along with doctors consultations, will be in the region of £50,000.
2) Immunotherapy treatment in Germany costing approximately £60,000 upwards which includes the preparation of a vaccine and numerous visits to Germany for treatment.
These innovative treatments are all very costly and far more than we can afford as a family. We are therefore asking if anyone can kindly support our efforts to save our beloved daughter.
Our hashtag #Give2Tell2 is in honour of the fact that Amani has been ill since her 22nd birthday. So we are asking people to kindly donate £2 (or more) and tell (at least) 2 people about our campaign.
Thank you in advance for supporting our fight for Amani and becoming part of #AmanisArmy.
We are raising money for potential life saving treatment in Germany for our beloved daughter Amani.
The lives of our whole family changed on Amani's 22nd birthday on 29th April 2020 when she collapsed at home after suffering her first ever seizure. Amani was rushed to hospital and within a few hours was diagnosed with a brain tumour.
Amani spent 4 days at L & D Hospital before being transferred to Queens Square Hospital in London where doctors took a biopsy. Amani spent 12 long days in hospital without her family by her side due to the Covid pandemic. She had to endure numerous scans, brain surgery that left 15 staples in her head and difficult conversations with medical professionals all by herself. She coped amazingly well and was finally discharged on 10th May 2020.
Two days later we received the results of her biopsy - the worst news yet! The biopsy revealed a cancerous, incurable tumour called Glioblastoma Multiforme, Grade 4 (GBM4), H3K27 mutation. This is a highly rare, aggressive tumour called a Diffuse Midline Glimoa that is particularly resistant to conventional treatment. Due to the position and depth of the tumour doctors concluded that it is also inoperable. The treatment options for this particular tumour are very limited. However, Amani started the standard treatment of 6 weeks of radiotherapy combined with a low-dose chemotherapy drug on 26th May 2020. Amani also tested positive for Covid-19 at this time so the chemo part of this treatment had to be delayed for over a week. These 6 weeks were the most gruelling any of us have ever experienced! Amani also had to deal with some additional bad news in her own personal life which left her broken beyond all comprehension. It was utterly heartbreaking to watch our daughter's decline physically, neurologically, mentally and emotionally.
Amani is an inspiration to her 2 younger sisters. She always had a complete zest for life, with an unique and charismatic character which had the ability to touch the lives of everyone she met. She always had a passion to care for others and volunteered throughout college for a local organisation, FOBE, to help children with special needs. She performed exceptionally well in her A-levels and secured a 1st class Honours degree in LLB Law from the University of Leicester. Her dream was to continue to help others and become a social worker. She commenced a 2-year Masters in Social Work at the University of Bedfordshire in Sept 2019 and her tutors expressed how she was showing great potential before her diagnosis. So, it has been very distressing for Amani's entire family and friends to witness her change so much during the 6 weeks of radiotherapy.In early August, Amani began her first round of intensive chemotherapy but at the same time she also started experiencing bad temple pains and unsteadiness. Amani's oncologist decided to send her for an MRI scan which unfortunately revealed that Amani's tumour had grown despite the treatment so far and it was advised to stop the current chemo. Again, we were all utterly devastated by the news but even more determined to fight on.We have discussed our treatment proposal with Amani's medical team and it has been agreed that in light of the very limited treatment options available in the UK, we will do the following: 1) ONC201 - a Phase II trial drug designed to fight the exact mutation of Amani's tumour that has shown very promising clinical results. The drug alone will cost £4,000 per month and, if effective, will require long term use. The treatment for one year's medication, along with doctors consultations, will be in the region of £50,000.
2) Immunotherapy treatment in Germany costing approximately £60,000 upwards which includes the preparation of a vaccine and numerous visits to Germany for treatment.
These innovative treatments are all very costly and far more than we can afford as a family. We are therefore asking if anyone can kindly support our efforts to save our beloved daughter.
Our hashtag #Give2Tell2 is in honour of the fact that Amani has been ill since her 22nd birthday. So we are asking people to kindly donate £2 (or more) and tell (at least) 2 people about our campaign.
Thank you in advance for supporting our fight for Amani and becoming part of #AmanisArmy.
Organizer
Yasmin Kim Stannard
Organizer
England