Life for Alicia

£2,040 of £40,000 goal

Raised by 57 people in 3 months
Alicia is on the edge and needs your help now. She suffers from rare diseases and is going to have life-saving surgery in June in Barcelona.

We need to raise funds for additional costs related to a neuro and spine surgery in Spain and further medical tests in the UK. Please, help us to Save Alicia`s Life.

She always helped others, now she urgently needs your support. After almost a year of misery, constant pain, being taken by an emergency ambulance to hospitals,  spending all our savings we think we have finally found it.

Alicia`s sister, Monika, had similar symptoms. Monika died in the hospital at the age of 25, and we still do not know what caused her death. We must investigate Alice as soon as possible to save her life.

Visit also LifeforAlicia official fundraising campaign website to www.LifeforAlicia.org 

Please, do share our appeal with your friends #LifeforAlicia. Thank you so much for your donations, support and help.

Based on previous appointments with experts and some medical tests results there is almost certainty that Alicia has multiple health conditions. Today we know that she needs to have a life-saving surgery abroad.

But we need further tests for these rare diseases to 100% confirm what her conditions are. We believe they may be

- The Ehlers-Danlos syndrome (EDS) and other connective tissue disorder

Dysautonomia or autonomic dysfunction, a condition in which the autonomic nervous system does not work properly

Mast cell activation syndrome (MCAS)

This is crucial to have as many medical test results as we can before a surgery and after to plan Alicia`s further treatment. 

Three sisters (from left Alicia, Maria and Monika)

Alicia`s Story - Rare Diseases Diagnostics

Alicia has been taken by an ambulance to A&E Hospital number of times from home or when she has fainted on the street. For nearly a year she has suffered from:

- Tachycardia and labile blood pressure (ranging from 57/30 to 218/157),
- Arythmia
- Insomnia and problems with breathing during sleep
- Hardly walks, very tired after daily activities at home, now staying all time in bed
- Numbness and stiffness in hands and feet, hands burning, weakness in muscles
- neck pain, headaches, back pain
- and many, many more ...

Since May 2017 she has begun to feel very bad and doctors haven’t been able to find the cause. All test results came back normal. That`s why we wrote to various specialists all over the world. Subsequent tests have brought terrible diagnosis and the need for urgent surgery in Barcelona.

We managed to have appointments and book next ones in London with the best rare diseases specialists. This requires further, expensive and highly specialized investigation.

Alicia is getting weaker every day, she spends all day in a bed, nights are uncertain, full of pain and shortness of breath. As long as there is no research finished, she cannot get appropriate treatment.

Alicia`s Story - Surgery and Additional Costs

The symptomatology seems to clearly correspond to Cervicomedullary Compression and Occipitocervical Instability. Alicia`s symptoms present themselves as disabling as her brainstem disability index is 95%.

Cervical fusion is currently the only option for cervical instability. Symptoms will only worsen if left untreated until Alicia is left completely bedridden and pain is unbearable. Intestinal paralysis, seizures, dysphagia, trouble breathing, and general paralysis, sepsis, death are common issues in advanced cases.

Principal diagnoses related to the current situation: Superior Odontoid migration (SOM) and Rotary Atlantoaxial Instability (AAI)

Alicia will be operated by neurosurgeon and spine surgeon Dr Vicenç Gilete and his team incl. Dr Bartolomé Oliver, both from Teknon Medical Centre in Barcelona. A surgery will fuse part of Alicia`s neck. Unfortunately, she will lose around 50% movement in her neck, but it will put a halt to her deteriorating symptoms and save her life. Find out more www.drgilete.com

Our family and friends are helping us to raise funds in Poland for a surgery. Here we are asking you to help us to raise additional funds related to a surgery in Spain. The biggest expenses would be medical transport from Cambridge to Barcelona, surgery insurance and costs of a staying in Spain.

After a surgery, Alicia will have to stay up to 12 days (including up to 2 ICU) in a hospital. Moreover, after discharge from a hospital, we will have to stay next few weeks in Barcelona to be under control of Dr Gilete`s Team and come for regular health check-ups.

When neurosurgeons will tell us that it is safe for Alicia, we will come back home, Cambridge, UK. 

We hope that we will finally find the best care and Alicia will be able to slowly return to her life.  We will carry on with planned investigations in the UK. 

Although we had to give up on many dreams and plans because of Alicia`s illness, we believe that we will find a new way for our future. Today we are grateful for every day of life, for every reason to be happy, for the love of the people who surround us and for your help. God bless.

Please, do share our appeal with your friends #LifeforAlicia. Thank you so much for your donations, support and help.

Before and Now

Kate, the best friend of Alicia, who from the very beginning has wonderfully supported her in this fight, she knows best how the disease has changed her life.

What was Alicia like before that illness and what is she like now?

Before: Full of energy and passion, cheerful, always on the move, smiling and sociable. Signing loud and fooling around. She’d be able to make smile on each face and give joy to many people.
Now: Tired, weak, needing rest all the time. The smallest effort causes a radical worsening of many symptoms, then again we have to call an ambulance. That is why
she almost all day stays in a bed. If she wants to go anywhere, she needs to use a wheelchair and rely on her husband`s help. Unfortunately, a provisional folding wheelchair is no longer helpful. It doesn’t guarantee enough stability.

Before: She would go everywhere and do thousands of things at once. She loved to travel and meet new people. Her blog Duolook.pl, which has risen from her love to travel, is the place where together with her husband, she was discovering the beauty of amazing places and sharing it with readers.
Now: Sometimes she has difficulties to speak. She can’t fully breath. Not to die during sleep, she needs to wear a special orthopaedic collar during the night. She uses it also during the whole day to make her life bearable.

Before: She used to read a lot of books, go to museums, galleries, take part in conferences. She taught seniors new technologies and memory techniques.
Now: She’s having temporary memory loss, problems with concentration. Forgets things she did a moment ago. Loses words. Sometimes, during a conversation, she falls asleep.

Before: She was a very active person as a journalist. She had made various interviews, reportages. After quitting media, she carried out many trainings and creativity workshops, wrote scripts. She travelled thousands of kilometres and trained more than 8 000 people. 
Now: Each position change from vertical to horizontal creates a risk of another attack. She spends her time alone or with husband only. Her husband had to quit a job to take care of her. All visits are such struggle that she resigned from seeing anybody. Her world is now all about counting time from one doctor’s visit to another.

Before: She loved life. She loved people. She appreciated every little thing and any time she had the opportunity to help others, she never refused. She was gaining a lot of joy, happiness and strength from it.
Now: She loves life. She loves people. She observes birds throughout the window, enjoys green buds on the tries. Cries while reading about other sick people raising funds for surgeries as she is. After her surgery, she plans to run a blog, where she could share her experience with others and help them to reach proper specialists whiling to save their lives.
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Professor Christopher Mathias and Alicia`s POTS diagnosis. Thank you so much for all your donations. Thanks to your generosity we could have this appointment. Alicia`s story #5 blog post - http://lifeforalicia.org/professor-mathias-and-pots-diagnosis-alicias-story-5/ #lifeforAlicia
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Hi everyone, just wanted to thank everyone from the bottom of my heart for all your kind donations. You can read Alicia`s story on her blog - http://lifeforalicia.org/shocking-diagnosis-from-barcelona-alicias-story-4
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Raised by 57 people in 3 months
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