Mum’s heartbreaking diagnosis
Devastated new mum pins hopes on groundbreaking treatment in Russia.
An Auckland woman given a devastating multiple sclerosis diagnosis just months after the birth of her first child is pinning her hopes of recovery on groundbreaking treatment in Russia.
Donna Agnew and her partner Che Brown welcomed their son Quinn in September last year.
But since waking on January 2 dizzy and nauseous, the new mum has battled crippling headaches.
“It felt like someone was hitting me at full force on the back of my head and then it moved from the temples into my head. This is a migraine to the tenth degree, just
insane,” she told the Herald on Sunday.
An recent MRI revealed the cause of the 37-year-old’s pain: multiple sclerosis (MS).
An auto-immune disease that affects the brain and spinal cord, MS is unpredictable, affecting people in different ways.
“It depends on where your lesions form as to what part of your body or your mind that it impacts,” Agnew said.
“A lot of people lose their mobility and end up in a wheelchair. One of the things I’m most worried is the impact on my cognitive ability.”
She said it was hard to even imagine that as a new mum she might be struck down with MS.
She does not qualify for funded treatment and is now hoping to get treatment called hematopoietic stem cell transplantation (HSCT), which was said to have an 80 per cent success rate, in Russia.
She faces costs of $100,000, and a family friend has launched an online campaign to raise funds. Last night about $30,000 had been raised on the Givealittle page.
Agnew said HSCT was used around the world and was publicly funded in the United States, the UK, Japan and Mexico.
She started researching overseas treatments after doctors told her there wasn’t much they could do to help her.
”[To get] New Zealand funding requires me to have two attacks and between those attacks, to be classed as a new attack, you have to have 30 days of respite, whereas my attack is every day,” Agnew said.
Multiple Sclerosis NZ national manager Amanda Keefe said the organisation recommended people try Pharmac-funded treatments before stem cell treatment overseas.
“A lot of people are coming back showing positive results. [But] there are people coming back with no results,” Keefe said.
Auckland University Associate Professor Dr Bronwen Connor said HSCT was essentially a bone marrow transplant. Bone marrow stem cells were known to secrete anti-inflammatories that could help reduce the symptoms of MS.
“It looks like, for many patients, it is beneficial. It’s not going to cure MS so they are looking at it to alleviate or slow some of the symptoms,” she said.
She said the long-term effects were not yet known.
“It is low risk in regard to the use of those stem cells but I can’t say there is no risk.
“That’s what the clinical trials can’t tell us because they haven’t gone on too long.”
Agnew said: “I realise there is this risk. But the lifetime of living with MS and not knowing what’s going to happen to me — that’s a much greater risk.”