Weʼre raising £10,000 to Help a little girl with CFC syndrome to hear, see and learn to speak and for our family to help her meet with specialists in USA
- Höfn, Iceland
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Our loving family of 5 lives in Iceland, just next to the biggest glacier in Europe. Myself, Joanna and my husband Agust have 3 children: Lilja, Daniel and Eydis.
Eydis is the youngest. At 5, she is a happy, active little girl. She loves to play with her siblings, cook with mummy, swim in a pool with her daddy and chase around the house.
Unfortunately Eydis was born 6 weeks prematurely and spent 14 days in infant NICU because of arrhythmia that she was born with. When we were sent home – instead of being a happy mummy I expected to be just like when my other children were born, I was a very scared one. My baby didn't look at me, didn't eat or sleep. She was also not gaining any weight hence when she was only 6 months she got a G-Tube. We were desperate for help to understand what was happening with our baby. Finally, after months of sleepless nights and countless doctors visits we were advised to see a neurologist that specializes in extreme cases . Eydis was admitted to a hospital where she spent weeks being tested in various ways.
It took a really long time to get a diagnosis and when it came it was a crushing one.
Eydis has a Cardiofaciocutaneous (CFC) syndrome. It a very rare and serious condition that affects brain, heart, skin, vision. There are only about 100 individual cases reported in the literature ever with under 300 cases estimated worldwide. Our daughter however bright in character has learning difficulty and developmental delay. She is one of two children living with it in Iceland. Until the rest of her life she will be depended on the support of others to help with her day to day routine.
It is not easy or cheap to care for Eydis. Since she was diagnosed she went through 6 surgeries, was a hospital resident for over 12 weeks, must take daily medications, requires hearing aid, glasses, special milk formula that helps her sleep (her brain doesn't produce the hormone for her to rest in a natural way. She doesn't experience natural bowel movements, she requires regular physiotherapy and specialist doctors visits.
4-6 times a year we need to drive around 500km to see specialists and doctors in Reykjavik. Eydis is under supervision of neurologist, cardiologist, dermatologist, dentist, oculist, occupational therapist, dietitian and many more. Cost of those visits and everything mentioned above is huge and greatly above our home budget. We no longer own any car hence when traveling we are forced to hire a car (public transport is not very popular where we live). Traveling to doctors so far away forces us to a night in a hotel which only adds to expenses.
Every 2 years CFC International holds a conference in USA for the families from all over the world. Therapists, teachers, doctors, scientist and researchers are under one roof to discuss the newest informations about CFC syndrome. And there is so much we need and want to learn about our girl! We would like to share our good and bad moments with other families going through the same thing. For a few days we want to feel supported by those who truly understand what we are going through as a family. But unfortunately it is beyond our home finance.
The goal of having this page is to share Eydis's story with you and to ask you for help. £5k would help us with the doctors visits which could potentially enable her to speak one day. It would cover the cost of some medicine and a new pair of glasses she require twice a year. £7k would send our family to America where the best specialists could run some tests on her and answer questions specialist in Iceland no longer can. £10k would do all that plus help us get a small car so we no longer would need to hire one when traveling long distance to see a doctor.
We appreciate your time reading this post any any donation you may want to give us.
Our warmest regards to you and your family,
Eydis, Daniel, Lilja, Agust and Joanna
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