Help for Emma and Ella: sick twin girls

Emma and Ella were born as our Christmas presents on Christmas Day in 2017. We were really looking forward to our identical twins. When it became clear that we were not expecting just one baby, we said to ourselves that the first years would be a bit difficult. But we had no idea what was ahead of us. The girls were born prematurely in week 32. Emmička weighed 1.95 kg and Ellinka 1.29 kg. We believed that in time everything would gradually catch up.

We soon realized that their development was not standard.

Life with CFC syndrome

In March 2020, doctors diagnosed the girls with a rare serious CFC syndrome – cardiofaciocutaneous syndrome. The girls have a problem with feeding, well-being and have delayed psychomotor development. They require all-day and all-night care. There are only about 4 people with this disease in the Czech Republic.

CFC syndrome means that one of the chromosomes in the girls' bodies is "broken" and cannot be repaired. Emmička and Ellinka will have a lifelong struggle so that they can always move forward. The development of girls is very slow. So the current state of their psychomotor development corresponds to the age of 9 months.

We constantly go for medical examinations and therapies all over the country. Ellinka has very limited vision, she underwent scleroplasty surgery in both eyes in Brno, which prevented total vision loss.

Emmička and Ellinka don't talk, they can't eat on their own. Food must be given to them lying down in liquid form in very small doses repeatedly throughout the day and night. Part of the diet consists of costly high-energy nutrition. We are forced to spend most of the time in the immediate vicinity of our home. Moving by car for more than an hour is very difficult for girls to manage. Also, any changes are very challenging for them, whether the environment or activities to which they are not used.

Hope for our twins

Thanks to constant exercise, rehabilitation and care, the girls were able to sit on their own in 3 years. Hippotherapy helps them a lot as well. A year ago, the little girls on horseback were crying and just lying down. This year, They are looking forward to the rides, sitting beautifully and holding a leather handle.

Hippotherapy gives us great hope that our twins will start walking one day.

How can you help to little twin girls?

The places where they undergo neurorehabilitation, occupational therapy, speech therapy. In addition, we have a large number of private therapies such as osteopathy and craniosacral therapies.

All rehabilitation and treatment programs are very expensive for our family in the long run.

Since the birth of the twins, we live only on the irregular income of Thomas. The girls require virtually constant care from both of us. We have already spent the savings we had for the health of the girls but we have to continue on the necessary rehabilitation, exercises, treatment stays and a number of aids at this time, so we ask for help.

Thank you so much.