We use cookies to ensure we give you the best experience on our site. If you continue without changing your settings, we assume you're happy to receive all cookies on this site. If you would like to, you can manually change your cookie settings at any time.

Tomas’s Journey with IFAP

Just4Children are fundraising to provide treatment and therapy for Tomas to make him more comfortable and improve his quality of life.
£6370
Total raised
42%
£15,000.00
Target
Donate Fundraise

183 donations

Tomas’s Journey with IFAP

Just4Children are fundraising to provide treatment and therapy for Tomas to make him more comfortable and improve his quality of life.

Tomas is 8 from Mountfitchet in Essex and in his short life time he has endured countless hospital visits and admissions. He was born with a rare syndrome called IFAP. This syndrome is a rare X-linked genetic disorder reported in only 40 patients. It is characterized by Alopecia and Photophobia from birth. Other features such as short stature, intellectual disability, and seizures may develop in the first few years of life.

Tomas is always smiling even when things are not going so well in his life. He is determined, resilient and super cuddly. With the right medical care, therapy and equipment, he keeps surprising everyone with his ability to learn.

Tomas has this rare genetic syndrome which also shows itself in development delay, visual impairment and bad skin infections. For this reason and, always wanting the best for Tomas, there is a treatment called Portable Nanobubble Hydrotherapy in the United States that will help deep-clean skin pores, remove toxins, dust and other impurities. Tomas’s skin is very dry and red all the time and this machine could change Tomas’s life for the better by preventing infections, reducing odours, killing bacteria and leaving the skin smooth and soft.

Tomas can’t walk and he is under the care at many teams at Great Ormond Street Hospital, Addenbrooke’s, Saffron Walden Hospital and local physios and occupational therapists.

This is where you come in. Every penny donated to Just4Children goes directly into the treatment and therapy, giving Tomas the best possible chance of quality of life.

Please keep supporting and tell people about this inspiring, smiling, cuddly boy that continues to try his best all of the time.

Info for donors

Application for support