For those who know Josh, you will know what an incredible little boy he is. Funny, loving, determined and deeply adored by everyone around him.

Over recent years we have watched Josh gradually lose skills that once came so naturally to him. After a long and heartbreaking journey, Josh has now been diagnosed with Niemann-Pick Disease Type C, a rare degenerative neurological condition.

In a matter of months, his needs have changed dramatically. Josh is now facing increasing mobility difficulties, epilepsy, swallowing problems requiring a feeding tube, communication challenges and significant care needs. We are now also beginning to put palliative care support in place.

The hardest part is that we simply do not know how much time we have with Josh. What we do know is that his condition is progressive, his needs are increasing quickly, and we want to make every moment we have with him as comfortable, supported and full of love as possible.

As parents, we are doing everything we can to keep Josh safe, comfortable, happy and surrounded by love at home. Alongside navigating the emotional devastation of this diagnosis, we are also trying to manage the practical reality of providing the level of care he now urgently needs.

While some support is available, accessing services, equipment, respite and consistent care through the NHS and local systems has been extremely difficult and slow, especially as Josh’s condition progresses so quickly.

We have set up this page to help fund:

• Specialist care and support at home

• Equipment and adaptations

• Therapies and communication support

• Travel to specialist hospital appointments

• Respite and overnight support

• Creating special memories together as a family

• Helping us balance caring for Josh while supporting his little brother, Eitan

If we are fortunate enough to raise more money than is needed for Josh’s care and support, any remaining funds will be donated to support families and research connected to Niemann-Pick Disease Type C.

If you are able to donate or even simply share this page, it would mean more to us than we can ever explain.

Thank you for loving Josh and supporting our family through the hardest time of our lives.

Dani, Alex, Josh and Eitan x