History of

Adam & Lea vs Sanfilippo
two kids one fatal disease and our struggle to help them
Adam

&

Lea

fighting versus

Mucopolysaccharidosis typ III (MPSIII) also known as Sanfilippo disease

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).

How can I help?

Donation

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: DE98550205000001499200
BIC: BFSWDE33MNZ

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

Fundacja SANFILIPPO
ul. Grzegorza Fitelberga 34, 41-807 Zabrze

Bank account:
PL 74 1240 4849 1787 0010 6837 8304 for USD
PL 90 1240 4849 1978 0010 6837 8069 for EUR
PL 79 1240  4849 1789 0010 6837 8405 for GBP
96 1240 4849 1111 0010 6820 4225 for PLN

Spreading Awareness

Come help us eliminate Sanfilippo disease, together!

Once a wise man said „Never, ever, ever, ever give up!” so that is our plan and we believe 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.

Adam & Lea

You have better ideas how you can help us fight Sanfilippo disease?

Great drop us a message via email or contact form.

This fight is really difficult so on hands and ideas on board!



Our Friends

Everyone who, was, is and hopefully stay with us until Sanfilippo is gone.

Thank you for having you!

Our blog

Et malesuada fames ac turpis egestas integer eget aliquet nibh icula!

instead of us

lets eliminate Sanfilippo, together!