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Natasha's story - how we're making life more bearable

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Natasha was completely overwhelmed when her daughter, Lilia, was diagnosed with MPS III. The impact

of receiving a diagnosis of a disease you’ve never heard of is difficult to communicate to others unless

you’ve been through it. The feeling of isolation and constant confusion becomes too much to deal with and navigating new jargon, hospital appointments, education plans, and more while getting to grips with your new life can be unbearable.

Natasha shared her story of her daughter's diagnosis and the difference the expert help from our support and advocacy team has made to her and her family.

“Our 7-year-old daughter, Lilia, was only diagnosed with MPS IIIB recently but since then we have had an incredible amount of care from the support team which has been invaluable to our family.

Our MPS Society support worker, Hannah, has attended school and council meetings to support us with putting together Lilia’s Educational Health Care Plan. The meetings can be overwhelming for us especially because it has only been a few months since diagnosis so having the MPS Society there is a huge support knowing that they will back us in our journey. In addition, we were offered counselling services and also a mindfulness workshop which I have found extremely useful.

They have definitely made the months since Lilia’s diagnosis more bearable

I can email or call Hannah at any time if I’ve got any worries or concerns and know that she or any other member of the team will be able to put my mind at rest.

We are extremely grateful for all the help and support we have received from the MPS Society. They have definitely made the months since Lilia’s diagnosis more bearable.”


We have five support workers who provide tailored support to more than 1600 families with a child like Lilia. To be there when we’re needed we rely on the generous donations of our community and our amazing fundraisers who take part in events up and down the country. We are so grateful for your support, thank you.

You can help reduce the feelings of isolation that Natasha had to deal with by setting up a regular gift of just £8 a month.

Help us to be there for families like Lilia’s, now and in the future. Please make a monthly donation.

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