Anne-Fleur and Jasmijn’s mother lies in bed 22 hours a day, but treatment is in sight

Due to an – to say the least – unfortunate coincidence, Lilian from Hoorn becomes seriously ill. During a number of unexpected operations under anesthesia, the woman appears to be affected by the seriously debilitating disease ME, or myalgic encephalomyelitis. The main complaint is that a patient is always exhausted, with every effort aggravating the complaints.

In the meantime, the mother has been struggling with the disease for almost 30 years and has completed her treatment in the Netherlands. The woman who was previously known as energetic, social and sporty – she completed the ALO in Tilburg, taught as a dance teacher in various places and taught sports at schools and universities – is also affected by even more misery. Lilian is diagnosed with breast cancer and later diagnosed with cervical cancer. Her body also has to work hard against these diseases. “The three of us are a strong team, but this match is becoming increasingly difficult to finish,” her daughters say.

Five percent energy and informal care

The now 25-year-old twins Anne-Fleur and Jasmijn know their mother only that she is ill. Currently, their mother’s energy level is about five percent and she spends about 22 hours in bed each day. “She has to decide whether she wants to shower for a day with the help of a stool, or whether she wants to save her energy for something else,” the sisters explain the harrowing situation, now that their mother is no longer able to do so. “She has been living in her bedroom for the last few months.”

The twins played football in the Eredivisie Women. Until a year and a half ago, Jasmijn played for SC Heerenveen women in Friesland. Anne-Fleur plays football in Amsterdam, at Wartburgia in the top class. Anne-Fleur now lives in Amsterdam, she comes to Hoorn several times a week to do shopping for her mother or to take over other tasks from her.

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Jasmijn stopped playing football a year and a half ago as a result of a serious concussion. “I had to recuperate in Zeist for a long time and played football for a year with problems,” she explains. “You wanted to continue, but that was no longer possible. I then went to live with my father, who took care of me. Things are better now and I now live at home with my mother to support her.”

‘Experimental’ treatment program in Australia

In Australia, therapists have been practicing for the last 25 years a treatment further developed, whereby the nervous and neurological systems are, as it were, ‘reset’. The treatment restores patients’ quality of life. For example, a patient who was previously in a wheelchair is able to walk independently again and another has much more energy than before the treatment.

Anne Fleur and Jasmijn researched the treatment together with their mother and decided a few years ago to register her. Corona ultimately threw a spanner in the works and the treatment had to be postponed. But now it is possible again and all three have time and space to come along. Lilian can report to Neurophysics Therapy Institute in Queensland, Australia, in April 2024.

“It will be a tough process,” Jasmijn explains. “But our mother can be herself in our presence. She receives treatment almost every day for six weeks by a team of real specialists. This is accompanied by a separate diet and a daily rehabilitation program of approximately two years in the Netherlands, supervised by the team from Australia. We are very happy that she can go. However, there is now stress about the high costs of such a process.”

Donation campaign and auction

To pay for the stay of almost two months and the treatment, an amount of approximately 46,000 euros is needed. Money that the family does not simply have in the bank account. To pay the costs, the sisters organize various actions. For example, they auction shirts of the football players with whom Anne-Fleur and Jasmijn played together in the past. There are football shirts from players at Ajax, FC Utrecht, FC Twente and De Oranjeleeuwinnen and also from foreign clubs such as AC Milan.

“Besides that we are a donation campaign started,” the sisters explain. This campaign has now raised more than 18,500 euros. “We want to try to raise money in all kinds of ways. All donations are nice and can really help her.”

New dot on the horizon

The twins hope that their mother will wake up rested after the treatment and have more energy to do simple, daily things. “That something like walking doesn’t have to cost much energy anymore,” says Anne-Fleur. “That would make a big difference. She has so many things that she would love to do, but can no longer do. That is very difficult. And it does not only apply to the fun things.”

“It’s actually your time now, if you can put it that way,” Jasmijn adds. “The treatment has given our mother a dot on the horizon. She has hope and a purpose to get up in the morning again. That is really great!”