Hampus, Julia, and Isabella’s Story

From Hampus, Julia and Isabella’s Dad

This is Hampus, Julia and Isabella.

Hampus was born in August 2014 and he is the oldest of our three children. Julia and Isabella are identical twins and were born in June 2016.

Hampus is the most adorable little boy; he likes to be quirky, he laughs a lot and he’s got a great sense of humor. Hampus likes to cuddle a lot but he also loves to sing and dance, in his own way. Hampus was so proud of his little sisters when they arrived and he became a big brother, although it was hard to share the attention at times.

Julia was the first of the twins to arrive, so she is technically Isabella’s big sister, though she is the smallest one in size. When Julia came to the world she weighed only 2 kg, so she had to grow into her own skin. Julia is often the silent and observant child, but she also likes to be quirky and silly from time to time. Julia is very kind-spirited.  She loves babies very much and she’s a very caring and loving sister.

Isabella has a more physical and forward kind of personality and she displays her emotions upfront. If she’s happy, you definitely know it, as well as if she’s sad or angry. Isabella connects easily with people and she is not afraid of anything (except for dogs). Isabella is also very caring, she loves to cuddle and she likes to dress up and make herself even more beautiful. Isabella likes to do things her way.

They all play very well together and you can tell that they love each other and enjoy each others company, even if it’s hard to share the attention and the toys from time to time. It is also so fantastic to see Julia and Isabella together, they truly share a special bond that’s probably unique for twins, and it’s like they have a different language only they can understand and feel.

An investigation was started for Hampus at the age of two, when his walking skills had not progressed normally for a boy his age. For about one year and a half, we did countless examinations and tests before we finally got the correct diagnose. Once we knew about Hampus condition, and learned about it’s inheritance pattern, we started to worry about our twin girls as well, and when they started to show early symptoms of the disease, we got them tested.

Hampus got diagnosed in May 2018; Julia and Isabella got diagnosed in November 2018. They have all been diagnosed with GM1 Gangliosidosis (type II, late infantile).

As parents, we are truly devastated, but we know we have to stay strong for the sake of our children. Even though it’s hard to know about their condition, at the same time, it’s also easier to have an explanation for why our children is not progressing normally as other children of their age.

We follow the latest developments in the medical science field closely, and we hold on to the hope that a cure or a treatment might soon be available. In the meantime, with the help of the Cure GM1 Foundation, we try to help raise funds and spread awareness of this devastating disease, that no family should have to suffer.

Exciting Update!

By the end of April 2020, our three children Hampus, Julia and Isabella, who all have been diagnosed with late infantile GM1, received gene therapy treatment through Axovant’s gene therapy trial for GM1 at the NIH in Bethesda, Maryland, USA. As far as we know, we’re the only family in Sweden with children affected by GM1 at this point, and when we started to reach out for other families online, we found the Cure GM1 Foundation. It’s through the work of the Cure GM1 Foundation that we first learned about all the research going on, which brought some hope into an otherwise devastating situation; It’s also thanks to their quick updates online that we managed to apply to the trial in time for all of our three children to participate. We are very grateful for all the work the Cure GM1 Foundation does. We’re hopeful that with this trial and the others that are coming in the near future, an approved treatment for GM1 is closer than ever before.

Testimonial

By the end of April 2020, our three children Hampus, Julia and Isabella, who all have been diagnosed with late infantile GM1, received gene therapy treatment through Axovant’s gene therapy trial for GM1 at the NIH in Bethesda, Maryland, USA.

As far as we know, we’re the only family in Sweden with children affected by GM1 at this point, and when we started to reach out for other families online, we found the Cure GM1 Foundation.

It’s through the work of the Cure GM1 Foundation that we first learned about all the research going on, which brought some hope into an otherwise devastating situation; It’s also thanks to their quick updates online that we managed to apply to the trial in time for all of our three children to participate. We are very grateful for all the work the Cure GM1 Foundation does.