Hi, my name is Samantha, and I am mum to our incredible little boy, Xander.

Xander is 4 years old and has a rare genetic condition called THOC2 syndrome, which affects his neurological development, learning, mobility, and communication. He is profoundly deaf, non-verbal, tube-fed through a gastrostomy, and experiences significant muscle weakness and delayed motor development.

Despite the challenges he faces every day, Xander is a happy, determined little boy who works incredibly hard to achieve things many children learn naturally. Every milestone he reaches is the result of years of therapy, perseverance, and his amazing fighting spirit.

This September, Xander will begin attending specialist school, and we want to give him the best possible start.

At the moment, Xander relies heavily on adults to help him move around. Although he uses a walking frame with support, he cannot walk independently and becomes tired very quickly. In busy environments, outdoors, or on longer outings, he must either use a pushchair or be carried.

One of the biggest challenges Xander faces is that he is attached to a feeding pump for several hours every day. During these feeds, he is often confined to one place because he is unable to carry the equipment himself. Whilst other children can move around, play, explore, and learn through their environment, Xander often has to sit and watch.

Recently, Xander was assessed by Occupational Therapy using a Little Wave Click lightweight self-propelling wheelchair we’ve added pictures of the little cutie exploring the wheelchair

For the first time, he demonstrated that he could propel himself forwards and turn independently. Seeing him move under his own control was an emotional moment for us as parents because it offered a glimpse of the freedom and independence that many children take for granted.

According to his Occupational Therapist, a Little Wave Click would make a significant difference both at home and at school by allowing Xander to:

❤️ Move independently whilst attached to his feeding pump.

❤️ Explore his surroundings and play alongside other children.

❤️ Access his new school environment more freely.

❤️ Reduce his reliance on adults for mobility.

❤️ Build confidence, strength, and independence.

❤️ Continue developing important physical and cognitive skills.

Although the NHS has provided a supportive pushchair, the specialist wheelchair recommended for Xander is not available through standard provision. The alternative wheelchair available would be considerably heavier and more difficult for him to self-propel, particularly when carrying the additional weight of his feeding equipment.

We have explored every funding avenue available to us and approached several charities, but unfortunately we have not yet been able to secure the funding due to limited charitable funding available at this time.

As a family, we already face many additional costs associated with caring for a child with complex needs, and purchasing this specialist wheelchair ourselves is simply beyond our reach.

We are therefore asking for help.

Every donation, no matter how small, will go directly towards funding Xander’s Little Wave Click wheelchair and helping him begin school with the independence he deserves.

If you are unable to donate, sharing Xander’s story would mean the world to us and could help us reach someone who can.

Thank you for taking the time to read about our wonderful little boy and for helping us give him the opportunity to explore his world on his own terms.

With love and gratitude,

the Ward family