Indie Lewis's journey with Niemann-Pick Type C

Hello we are the family of Sam & Sophie who are the parents of baby Indie Lewis, we have created this go fund me page so that we can raise money for them as a family to 1. Make special memories with Indie, 2. Be able to have funds for any future medication needed that is not availible on our NHS, 3. For any therapy that will be needed (even in different countries) 4. For any special equiptment that Indie may need going forward. At this moment in time we are unsure what else will be needed due to this disease being so rare and unique to each person it effects.

Going forward we as a family will be doing whatever we can and whatever it takes to raise awareness of this disease and provide Sam, Sophie & Indie with all the support they need whilst they start this unknown journey. If you can help in anyway please contact us or donate to this go fund me :)

Please read Sam, Sophie & Indies story below.

On the 10th of May myself and Sam Lewis received the worst news we as parents could hear.. Indie got diagnosed with a rare genetic disease called Niemann-Pick Disease Type C1 and Type D.

Niemann-Pick Disease Type C (NPC) is a hugely life-limiting neurodegenerative disease caused by an accumulation of lipids (fats) in the liver, brain and spleen.

There is no cure for the disease and most people including doctors and GPs have never heard of this disease, which breaks our hearts as parents because we would do anything to prevent anything happening to our baby. Yet we feel useless now because there is nothing we can do to stop this from happening and instead we are told to come home and “enjoy Indie now and make memories”. As you can imagine we are just heart broken.

The main thing I have learnt from this is to always trust your instincts when it comes to your babies, if we didn’t keep going back and forth to different hospitals and doctors we would still not have the diagnosis.

No one will know how severe it is going to be, when certain things will happen and what will happen even the doctors don’t know because everyone’s journey is completely different and Indie will be the one to show us her journey.

The only way we are getting through things at the moment is taking each day as it comes and trying to be as strong as Indie

We will never understand how this could happen to anyone, especially Indie. We are praying everyday that eventually there will be a cure for this fatal disease.