This fundraiser is dedicated to 6 months old baby, born in Slovakia with very rare skin disease called Harlequin Ichthyosis.
Harlequin Ichthyosis is a severe genetic disorder that mainly affects the skin. The new-born infant is covered with plates of thick skin that crack and split apart. Very painful diagnosis, with no treatment and high rarity.
Alzbetka, was born as a fourth child to my classmate from secondary school, Natalia.
She is so far the only case registered in Slovakia and with her level of severity most likely in entire Europe.
Due to its rarity, there is no cure for the illness as well as very little knowledge. Therefore, parents are forced to learn from research on internet or from network of other parents with children with this rare disease.
Alzbetka was born with a huge pain and she spent first 4 weeks in ICU. She was released home a week later after she was transferred to neighbouring country for additional treatment. Both parents had to give up their day jobs to be able to provide extensive care she requires. Most of the expenses associated to her care are covered from their own pocket.
However, 6 months later, they found themselves at the end of their financial possibilities. To provide their daughter comfort with less pain, is financially as well as time demanding.
Funds from this raiser will be specifically dedicated for:
- An air-conditioner for her bedroom
Due lack of thermoregulation Alzbetka’s bedroom must be temperature managed to avoid over or under body heating.
- House extension with her own bathroom and washing machine to provide her the full comfort and maintain the family regime with other 3 young siblings
Skin regime is the most important aspectof her care. She requires 2 hours bath, twice a day. For a family with 3 other children, an additional bathroom is inevitable.
- Special body creams, bath oils, vitamins and eye drops
Alzbetka’s body must be moisturized with a thick coat of cream every 3 hours. Delay causes her skin to harden extremely quick, like an eggshell, followed by painful cracks with the tendency to bleed.
Right now the cream consumption is around 3 litres a day. 1 L is approximately 35-40 euro. The same goes for special bathing oils because water alone would dry her skin even more. None of this is covered by insurance company, the same applies for eye gels and drops.
- Plastic surgery for her eyes, hands, and ears
Alzbetka is not able to close her eyes or wink and to keep them in good condition, they need to be moisturized with special gels and eye drops, night and day, as often as possible. At later stage, she will require an eyelid plastic surgery.
Her ears clog with a mix of skin and earwax at extremely high speed. Children with harlequin ichthyosis tend to have hearing difficulties, because of clogged ear canal. Frequent surgical cleaning under a full anesthesia and hearing aid may improve her ability to hear some noise.
Her hands need to be bandaged during the night, as she is not able to open her palms and stretch her fingers. Thanks to her parents intensive carethey saved most of her fingers and toes. However, bandaging is quite painful, and it has the tendency to bleed. In the future, plastic surgery will be needed.
The list is long, but I believe with your help we will provide her parents enough financial support to provide some comfort and capacity to meet Alzbetka’s needs.
For more information please visit: https://elizea.sk/eng/