
Help my sister get life changing HSCT treatment
Donation protected
Last year in October Mel woke up suddenly feeling unbalanced and struggling to get out her words. She put this down to tiredness but as the day progressed her speech became slurred and she felt even more uncoordinated which resulted in her calling for emergency services. This turned into 5 days at the Cumberland Infirmary Hospital and after CT Scans, Lumbar Puncture and an MRI that showed an abnormality on her brain, she was diagnosed with Multiple Sclerosis.
MS is an autoimmune condition when something goes wrong with the immune system: it mistakenly attacks healthy parts of the body. The immune system attacks the layer that surrounds and protects the nerves called the myelin sheath. This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted.
This can cause fatigue, difficulty walking, vision problems, bladder issues,
numbness or tingling in different parts of the body, muscle stiffness and spasms, problems with balance and co-ordination, problems with thinking, learning and planning.
These can come and go in phases and gradually worsen.
After coming home from the hospital. Melanie felt so weak she struggled to even lift a spoon to eat. After this diagnosis she was left no option but to leave her job and adjust to a new way of living.
Seemingly, everything started to calm down but again on the 30th December she had a relapse, which resulted in her losing use in her whole left side and being bound to a wheelchair for 3 months. This confirmed the disease was rapidly evolving and treatment was needed.
Melanie is currently on infusions of a drug called Tysabri every 4 weeks, which makes her very fatigued and down. These infusions suppress symptoms of MS, but do not stop it or the damage it does. Long term use can also lead to serious side effects including dizziness, inflammation of the nose and throat, feeling sick, vomiting, rashes, shivering and an increased chance of infection and decreased liver function. Worryingly, this treatment can also increase the risk of progressive Multifocal Leukoencephalopathy, a brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus; a common infection completely unrelated to MS. Melanie has the JC virus in her blood, and taking Tysabri is a huge risk every time and not to mention a huge worry to have in the back of her mind.
It is normally kept under control but if the immune system is weakened it's less able to fight an infection, which may occur when taking Tysabri - the virus can become active and cause inflammation and damage to the brain.
This is why we are raising funds for a more permanent, life prolonging treatment called HSCT(Hematopoietic Stem Cell Treatment) which halts the progression of MS, rather than just calming the symptoms.
Currently, you can only have his treatment on the NHS, or privately in the UK when you're no longer seeing progress with other drugs, which can take years, and due to shortened lifespan already this can be detrimental. In the short time that Mel has been diagnosed, she is on crutches at 35 years old and two relapses have already happened. She is very worried about what a third will do.
The treatment she needs is in Mexico at the Clinica Ruiz clinic and is the best option. The cost is lower here than such as London (which can add up to £100,000) and can be available at whatever stage of MS you are in. She has already been put into this system and approved. We just need to raise the amount needed...£50,000. These expenses are for the initial treatment, travel and accommodation while in hospital.
The average life expectancy for people with MS is around 5 to 10 years lower than average - because of this, Mel is worried she will not be around for her loved ones; especially to see her daughter Elise grow and does not want any of us to have to see her deteriorate.
We know that this is very costly, but anything towards this treatment is greatly appreciated and will be used to aid in Mel getting whatever she can from life. I want to help her achieve this, give her a second chance and hope for the future.
Thank you for reading and any support is a huge help and greatly appreciated by us all involved in Mel's life.
Aswell as this fundraiser we are in the works on multiple events including fell walks and raffle nights, auctions if you would like to join or offer any assistance.
Shannon x
Organizer and beneficiary
Shannon Cooper
Organizer
England
Melanie Cooper
Beneficiary