Meet Albert - 6 years old from Brentwood, Essex.
He is our Prince, our Superstar and we are his biggest fans!
For those of you that don't know us here is 'quick' introduction:
Albert was born 2 weeks late via an emergency c-section, we had a happy and what seemed to be 'normal' baby boy. At 10 months old Albert was referred to a paediatrician, physiotherapist and occupational therapist as he wasn't meeting any of his milestones. Fast forward 4 years and after a constant stream of hospital appointments, therapy appointments, Dr's meetings and genetical testing Albert was diagnosed with Pitt Hopkins Syndrome (PTHS), which is a rare, genetic, neurological disorder affecting a specific gene in chromosome 18 called TCF4.
Pitt-Hopkins syndrome can have a variety of signs and symptoms. Specific symptoms present and their severity can vary from person to person. Early symptoms, which often become apparent in the first year of life, may include very low muscle tone (hypotonia) and significant developmental delays. Some infants have a small head size (microcephaly). Children may learn to walk months or years later than expected, and some children never acquire the skills to walk independently. Speech is significantly delayed, and while some children learn to say a few words, most do not speak. However, some are able to understand and follow simple directions. Intellectual disability generally ranges from moderate to severe. Other symptoms can include seizures, breathing difficulties and chronic constipation.
People with PTHS are usually very happy and affectionate but do get very frustrated when they find it difficult to communicate. And for those of you that know Albert know how happy he is and how much his smile lights up the room.
Albert cannot crawl, walk or talk and he relies on a lot of sensory input - the kid loves a light! He will always need the help and support from different therapists and rely on equipment to help him become as independent as possible and this is why we are starting our fundraising journey. The NHS provide Albert with what he is entitled but the services are so stretched. So in order for him to receive the therapy and equipment he will needs to help him live as independent as possible we are going to have to fund a large amount of it ourselves.
We have set our initial goal at £10,000, this may sound like a large sum but for Albert to have one hour of physio each week the annual cost is £4420. This is without any other therapies and accessing block sessions.
We would also like to use the funds to get him any mobility or sensory equipment he needs.
It would mean the world to us, any donation big or small, to help Albert on his journey. We are planning on doing some fundraisers this year.
Thank you for reading our page.
Lots of Love Carly, Brad, Albert & Mabel xx
7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.