Sarah, on the steps of the Faculty of Law where she is in her third year. / SALVADOR SALAS

Sarah's battle to get life back to normal

Money. The Almagro family say the public health system should pay for the hands and feet that allow amputees to live an independent life, but the promise has only been half-kept so far

ANA BARREALES

Sarah's life has been a miracle since that summer when she was 18, when she had just passed her university entrance exam with flying colours and then caught meningococcal meningitis, with sepsis and multi-organ shock. She spent ten days in a coma, suffered several cardiac arrests and kidney failure which meant she needed dialysis. An initial amputation of her fingers wasn't enough and surgeons had to go further: her arms were amputated below the elbow and her legs below the knees. She underwent 25 operations in all, including skin grafts and a kidney transplant.

"I promised Sarah that I would get her life back, as close as possible to how it was before. Her mother and I told her that we would do whatever it took," says her father, Ismael, summing up what has guided the Almagro family ever since she went into hospital: to regain as much normality as possible. Sarah is well aware of this: "My parents have always presented me with a problem and its corresponding solution," she says.

They called on the public health service to finance the artificial hands and legs that would enable Sarah to live an independent life, but that promise has only been half-fulfilled. The Ministry of Health has just updated the orthoprosthetic catalogue, for the first time since 1986. Now they need the Junta de Andalucía to do its part towards financing the more than 200,000 euros which was the cost of the arms and legs that Sarah is using at present. As they will need to be replaced every few years, it could cost 2.5 million euros during her lifetime.

Sarah, in front of the Law faculty. / S. SALAS

Now aged 21, Sarah is a bundle of energy who is in her third year of Law studies at Malaga university. She is well-known and liked there. "She is a fantastic student," says her professor, and Sarah smiles and looks down because she tries to be just like everyone else and not stand out. She is also embarrassed when someone comes out of the office to collect her papers so she doesn't have to spend long in the queue.

Exercise, a necessity

The summer following her operations was the first one during which she was able to study, but even so she obtained two credits. Now she attends classes in the mornings, arriving with her brother in his car and in the afternoons "I have to exercise," she says.

She does crossfit and if there are waves she heads for the beach. She has just become the runner-up in the world adapted surfing championships and is now dreaming of the Paralympics. "Then I have a bit of a rest, because wearing four prostheses is like permanent exercise. The arms weigh 1.5 kilos each and the feet weigh 2.5," she explains.

"I went to the hospital with terrible pain. At first they said I had gastroenteritis. All I remember is waking up in Intensive Care with my hands and feet in bandages. Then you think, why me? At that time I didn't know I had been in a coma, or that I nearly died or about the amputations. I didn't realise until a month afterwards," she says.

Sarah, when she was younger. / SUR

She agreed with her parents that medical decisions would be advised to them first, because they would know how to explain things to her. "Sometimes I wished the doctors had been a bit less distant with me. I was 18 when I went into hospital so they treated me like an adult and in a way I was, but I was also a girl all on my own in a big hospital," she says.

"11 out of 10"

Along the way she has also come across very lovely people, like the staff at the Costa del Sol hospital who she says she would mark "11 out of 10". And the intensive care nurse who didn't leave her side during her first night in the IC unit, when her parents had been told to say goodbye to her because there was only a three per cent probability that she was going to make it.

One night, when she was out of the coma, they told her that the following day she would have to be operated on to amputate her arm above the elbow and her legs above the knees. Nobody is prepared for something like that, but they wanted a second opinion and spent nearly a month trying to find the best for their daughter. They then found an orthopedist in Barcelona, who offered to talk to the doctors and advise them on how to facilitate the prostheses. They remember one of the doctors saying: "I don't understand prosthetics, I just cut where there is no life." But they are also grateful to the nurses from the burns unit, who looked after not only Sarah but also her mother, Silvia, during the multiple skin graft operations.

Then came the recovery. What they were doing at the hospital didn't seem enough to Sarah's parents. And she, who used to do crossfit before, adapted the training to her situation in order to gain muscle mass. She used the same discipline to get back in the water again. "When they did the amputations, my father said he would teach me to swim and now I can do all four styles," Sarah says.

With this training, she adapted quickly to the prostheses. "Everyone told me it was going to hurt a lot and I wouldn't be able to walk, but I'm quite stubborn and when I get an idea in my head..." she says.

Sarah reading a book. / S. SALAS

Her recovery from the transplant was similar. "My father had already talked to nearly everyone in the hospital about giving me one of his kidneys. Although my mother was also compatible, he said to her "I'm going to take care of this, you have already done enough, you gave her life and now it's my turn". So I had the kidney and started to feel really well. When they moved me from recovery to a room on my own, the first thing I did was post a story on Instagram, because I had been making a lot of fuss on social media about this transplant and I felt really proud and wanted to tell everyone," she says.

Multidisciplinary team

Having a multidisciplinary team of professionals in the field of amputations is something she is pushing for. "For the doctors, having to amputate a limb is a sign of failure and they seem to think that that person is going to stay sitting down for the rest of their life, but it's not like that. If it isn't done properly from the start it is psychologically challenging for the patient, with more operations, more cost and at best you are condemned to be stuck in a wheelchair," she says.

Someone who has played a very important role in her recovery is Jens Müller, an orthopedic technician who has also worked with Irene Villa and various paralympic athletes. Müller says medical professionals need more training in order to apply certain techniques in the amputation that will greatly facilitate the fitting of prosthetics. There are patients who were dying but are now doing well thanks to advances in medicine. "In the last two years I have seen a dozen quadruple amputees, more than in my whole career. The problem is that if people don't have money, they can't access functional prosthetics because Social Security doesn't cover them," he says.

Sarah's family raised funds through the somostuola.es foundation, but they believe Social Security should finance this, just like they do other illnesses.

There is a huge difference between the hands and legs that Sarah uses, which allow her significant independence, and those provided by Social Security. The Ministry's new catalogue has increased the money for lower and upper limbs but it is still far from the 260,000 euros the family has spent on prostheses so far, not counting the trips and stays in Madrid. Ismael is waiting for the regional government minister Elías Bendodo to keep his word, when he said at a meeting with them that the Junta would make up the rest of the money. "Do you want me to sign something?" he asked. To which Ismael replied: "No, I trust your word".

The vaccine

There are other battles which they have won, such as having the vaccine which would have protected Sarah from meningitis included in the vaccine calendar. "We have the moral obligation to give back to society what it has given us, and we are not going to allow any other family to go through what we have had to," says Ismael.

Sarah has not had a good experience with psychologists. "I have felt very down at times, like when I cried and told my mother I was no use to anybody and was going to be useless for the rest of my life. And she said to me, "was Stephen Hawking useless, then?". The psychology my parents and my brother have given me has been amazing and better than any other. I am so lucky to have this family. If I had been born to another, I would probably be depressed and anxious," she says.

Prostheses she wears enable her to do things like turn the pages of a book. / SALVADOR SALAS

Talking to other amputees has also helped her, like her friend Davide, who went through the same as she did a few months earlier, and they talked about how to look after their stumps and "the frustration that you can feel".

Now she wants to complete her studies and "pass on what was told to me one day by three people who had overcome ordeals and came to my school. They really helped".

"I learned that the world we dream of doesn't exist and it is up to us how we deal with things that happen," she says.