Story of

Adam & Lea vs Sanfilippo

two kids one fatal disease and our struggle to help them


Check how we are doing. More on our efforts to support research and raise awareness you can find on website of our organisations: Fundacja Sanfilippo and Sanfilippo Initiative.

Our story

This story is about us:  Adam and Lea, siblings connected in struggle for life against MPSIII also known as Sanfilippo disease.

My name is Adam and my younger annoying sister is Lea. It is no so long ago that we entered the world and we’ve already had the first serious flop… Sanfilippo. What can we say – each of us had a 25% of having this defect, because of mutations of one damn gen. And guess what – both of us have it. Well, what can we do… our parents made their research and it turned out that there is hope for us! But this topic is tackled in other sections of this website. Here you will find a little bit of information about us. Although we have this crap disorder, we are very cool and adorable kids.

What is this Sanfilippo or mucopolysaccharidosis typ III (MPSIII)?

If you have never heard this name before – do not worry. This is a rare metabolic genetic disease, in which so called mucopolysaccharides are being excessively accumulated within various body cells. This is caused by a lack or deficiency of a specific enzyme needed to break down those mucopolysaccharides. MPSIII is a fatal disease. It is difficult to diagnose as at the beginning the children are developing normally, even though they are being born with a defective gene. The disease is a progressive disorder that mainly affects central nervous systemOver time, brain cells are being filled with waste, which owing to the lack of the enzyme, is not processed as it normally would be. The brain is gradually being impaired which results in children’s hyperactivity, insomnia, loss of speech and cognitive skills, mental retardation, heart problems, seizures, loss of mobility, dementia and eventually death usually before adulthood (on average, 15 years of age).

Never, ever, ever, ever give up! We have faith that together we can make a difference not only for us but also for our brothers and sisters in this disease that live currently or will be born in the future.

How can I help?

Donation in Germany

If you are based in Germany you can support us by donating to Sanfilippo Initiative e.V., all donations are tax deductible for German tax payers:

Sanfilippo Initiative e.V.
Praunheimer Landstr. 156, 60488 Frankfurt am Main

Bank account:
Bank für Sozialwirtschaft
IBAN: DE63 3702 0500 0001 4992 00

Donation in Poland

If you are based in Poland you can support us by donating to Fundacja Sanfilippo, all donations are tax deductible for Polish tax payers:

ul. Grzegorza Fitelberga 34, 41-807 Zabrze

Bank account:
PL 90 1240 4849 1978 0010 6837 8069 for EUR
PL 37 1240 1343 1787 0010 9083 1264 for USD
PL 96 1240 4849 1111 0010 6820 4225 for PLN


lets eliminate Sanfilippo, together!