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Wednesday 16 October 2019

'We just want to bring her home', says husband of locked-in mum

Marcin and Aleksandra Filak with children Peter (13) and Anastasia (13 months)
Marcin and Aleksandra Filak with children Peter (13) and Anastasia (13 months)
The Filak family
Aleksandra Filak (34) suffered a stroke just three weeks after giving birth to her second child
Aleksandra with her son Peter before she suffered from a stroke
Catherine Devine

Catherine Devine

The husband of a woman who suffered a catastrophic stroke after the birth of their second child has said all he wants is to bring his wife home.

Aleksandra Filak (34) suffered a stroke just three weeks after giving birth to her daughter Anastasia in November 2017.

Following the stroke, the mum-of-two also suffered a bleed to the brain and was left in a condition known as "locked-in syndrome".

Her condition prevents all movement and communication verbally due to the total paralysis of almost all muscles in her body, except for vertical eye movements and blinking.

Aleksandra Filak and Marcin
Aleksandra Filak and Marcin

Polish native Aleksandra's husband, Marcin, said that there is no cure but added that Aleksandra can understand everything that is happening around her and can communicate with her young family by blinking her eyes.

"My wife is at home for the weekend so she is in good form at the moment, but we want to be able to bring her home permanently," Marcin told Independent.ie.

"Three weeks after our baby was born, Aleksandra had a stroke due to a clot in a blood vessel in her neck.

"We don't know why this happened, but we think it had something to do with her labour. After the stroke, she had a bleed in the brain and doctors told me she was going to die but a few days later, she opened her eyes and it was a miracle.

"From then, we've tried to do everything we can to help her.

"Three weeks after the baby was born she went from a young, healthy woman to a flower. She can't move, or talk or anything. I can't understand why this happened, it was a big surprise for everyone."

Treatment

Following the stroke, Aleksandra was sent to the Mater Hospital, where she underwent treatment for nine months before moving to the National Rehabilitation Hospital (NRH) in Dun Laoghaire, where she has been for the past five months.

"The NRH is a very good hospital and they are doing everything they can to help her," Marcin said.

"I spend every day with her in the hospital and I have seen slight improvements, so I have some hope for the future.

"Six months ago, her swallow was at 20pc, now it's at 80pc.

"There have been some movements with her eyes too.

"She suffers from double vision so can't see very much but that has improved slightly too.

"I have to keep hope that things will continue to improve."

Marcin, who is originally from Poland but now lives in Co Meath, said that he is waiting for a community nurse to become available so that his wife can be cared for at home.

"Her doctors said she can come home for good but I can't bring her home until a nurse becomes available to look after her.

"We are just waiting every day to bring her home.

"It's very frustrating. We have no idea how long it will be until a nurse is available.

Suitable

"Aleksandra is happy at home and we all just want her home, but I can't do it all myself.

"After Aleksandra became ill, I began looking for a new wheelchair-accessible house so that we could take her home at some point.

"It took several months before I found a house suitable for us to rent. We have prepared everything now for her to come home. We are just waiting."

Marcin is now the sole carer for the couple's two children Peter (13) and Anastasia (13 months).

"At the moment, we are coping OK because we have some help. My mother and mother-in-law help me when they can and I'm very happy to have that help," he said.

Marcin said that the local community has also been great and thanked everyone who has helped fundraise for the family.

"We were able to buy a van that my wife can travel in with her wheelchair and that was a huge help to us. Beforehand I had a good job and a good life and money was never a problem.

"We were planning to buy a house here and settle down as a family. Now we receive social welfare but it doesn't cover all the costs we have or all the therapy and equipment my wife needs."

Marcin had to give up his job as an engineer in order to care for his family but hopes someday to return to work.

"At the start I continued to work, but I realised I couldn't do it all myself. I look forward to the day when I can return to work because it means we have gotten to a point as a family where my wife is being cared for and my children are being looked after. That is my hope for the future that we will get to that point.

"I spend every day in the hospital with Aleksandra. I am waiting for the day when I can have her at home with me."

The HSE said in a statement: "The HSE can't comment on an individual case but as already mentioned depending on the clinical nursing needs of a discharging patient, the public health nursing service would see a patient within 24-48 hours."

If you would like to donate to the Filak family, you can do so here

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