Cork family raises funds for US and Turkey procedures for little girl who was not expected to live

Family of eight-year-old born with 14 major birth defects needs $80k to cover upcoming medical surgeries.

The family of an Irish girl who has repeatedly defied the odds ever since doctors gave her little chance of survival at birth has appealed for help after being informed their daughter urgently requires two major medical procedures in the coming months.

Alicja Nowicki, eight, suffers from one of the severest known cases of Charge Syndrome, a rare genetic disorder that left her with 14 major birth defects.

In the youngster's case the illness, which has left her unable to swallow or smell, almost blind, with very limited hearing ability and with breathing and heart problems, as well as a deformed leg, was one of the worst ever on record.

When she was just three weeks old, she came through the first of many seemingly insurmountable problems when she was rushed to the children's hospital in Dublin for life-saving heart surgery.

And ever since much of her short life has been taken up with countless medical appointments, examinations and physiotherapy sessions.

Less than two years ago the youngster's right leg, which had no tibia, no ankle joint, half a knee joint and a club foot, was reconstructed at a specialist hospital in Florida, enabling the youngster to walk for the first time.

However, doctors have now warned that the same leg, which has started to twist, requires further corrective surgery in the U.S. before the damage to the limb becomes irreversible and results in the youngster permanently losing her ability to walk.

Another procedure to improve her limited hearing is due to take place in Ankara, Turkey in the coming weeks.

Although Alicja was born deaf, she gained partial hearing six years ago when she became the first child in Ireland to be fitted with brain stem implants.  However, surgeons believe her basic hearing ability would be significantly enhanced if she received a cochlear implant in her right ear.

The girl's parents, Anna and Radek Nowicki, who have another, child two-year-old Nadia, described the two complex operations as "critical" to their oldest daughter's long-term well-being.

But they have been forced to appeal for help to raise $80,000 in funds needed to cover the total costs of both procedures, as neither are covered by Ireland's national health service, the HSE.

Anna Nowicki, 38, who lives in Ballintemple, Co. Cork, said, "Alicja has been through so much, but unfortunately there are two new very big surgeries she needs in the next few months.

"Alicja's greatest pleasure is walking.  It's her passion, but for the past 12 months her reconstructed knee has been twisting and becoming more fragile. Her medical team at St. Mary's Medical Center in Florida has told us she needs surgery within the next six months or she will almost certainly never walk again.

"She is also at a very high risk of losing her hearing, so cochlear implant surgery is vital, and we have tests booked in Ankara in early February to assess her ahead of surgery."

Anna added, "Alicja's also at high risk of completely losing her vision, but at the moment we're focusing on the surgeries for her leg and hearing.  Those are our priorities. We just want to give her the best quality of life we possibly can."

For further information on the youngster's upcoming procedures, visit www.alicja.org.