Meet Andrew, his beaming smile and zest for life!
Andrew is a student at Henshaws Specialist College. He is one of just over 100 people in the world to have been diagnosed with PACS1 syndrome, a rare genetic disorder identified less than 10 years ago. PACS 1 awareness day on 7th February marks the anniversary of the first diagnosis of the syndrome in 2011.
Linda, Andrew’s mum, is sharing their story to help raise awareness of the syndrome and of PACS1 Smiles, which offers support for children and their families around the world who are living with PACS1 Syndrome.
Individuals with PACS1 syndrome have strikingly similar facial features, difficulty walking, have limited hand control, little or no speech, difficulty eating and drinking and learning disabilities ranging from mild to severe.
Linda is keen to point out that all the PACS1 children also have determined personalities, beaming smiles, and a zest for life!
“My son Andrew has made significant progress at Henshaws, especially in terms of his social skills and in achieving one of his main personal independence goals, feeding himself.
We always knew Andrew had hidden depths and a determined character. For this reason, we chose to send Andrew to specialist schools, where he has had lots of input from many gifted teachers and therapists.
Andrew was diagnosed with PACS1 syndrome in 2017 aged 20, and at the time was the 50th person in the world to be diagnosed. Prior to this, he had no real diagnosis other than global developmental delay, physical and learning disabilities, and speech and language difficulties. Andrew experiences all the difficulties (and the qualities) mentioned above, in common with his PACS1 “siblings”.
Determination and progression
Now in his fourth year at Henshaws Specialist College, Andrew has progressed from being tube fed to sitting with his peers at mealtimes and eating three meals a day. His gastrostomy button was removed in 2017 after 19 years of tube feeding, and towards the end of last year he progressed to using a spoon to be able to feed himself. This has been a long process which started way back in primary school, and is a real achievement for Andrew who has severe physical disabilities and needs support with everything he does. He stopped eating altogether between the ages of 8 and 16 – a skill which he thankfully regained due to the expertise and persistent support of his teacher at the time.
We believe that being with his peer group at College gave Andrew a real incentive to sit with his friends and eat his meals. He was keen to join in and worked hard with staff at Henshaws to develop his coordination and ability to feed himself with a spoon.
Developing independence and social skills
We first looked at Henshaws when Andrew turned eighteen. We wanted to find somewhere that would not only meet his educational needs but also enable him to live more independently and transition into a more independent adulthood and have a life away from us.
Living on campus with other students really ticks all the boxes for Andrew (and for us). We are sure that Andrew would not have achieved all that he has without Henshaws. He clearly thrives at College, we can see when we visit him that he is happy – he is often beaming from ear to ear.
Feeding has been one of Andrews goals and on the strength of his success at College he has been able to transfer this skill to his time at home. We are delighted!
We have also noticed how he has developed his social skills and ability to interact with others and join in in social occasions. Last Christmas was very special because, for the first time, Andrew was more able to engage with the whole family including his young nephews.
At College he has been doing a lot of groups activities and has formed excellent relationships with some of the other students. It was the social side of College life and access to the varied waking day curriculum that was a key reason for us wanting Andrew to come to Henshaws.
Andrews confidence has gone through the ceiling; he is more open to a range of things and has significantly matured. We can now watch films as a family and they are more appropriate to his age, rather than those aimed at young children. This means we can enjoy laughing along together – he’s a big fan of films with visual gags.
We took Andrew to a PACS1 family gathering in Nijmegen last year, which was a wonderful opportunity to meet other PACS1 families. We also met Dr Janneke Schuurs-Hoeijmakers, the geneticist who first recognised the PACS1 syndrome.
“I am impressed that Andrew went from complete tube feeding to eating by himself! Wonderful, and also hopeful for other parents who are struggling with eating problems. Eating is troublesome for many of the children. Special care, attention and a multidisciplinary approach, focusing on the individual needs for the patient are likely to have the best results for individuals with rare intellectual disability syndromes, such as PACS1”
Dr Schuurs-Hoeijmakers, the geneticist who first recognised the PACS1 syndrome
We are realistic about Andrew’s future and his condition and what that means – we know the difficulties he will continue to face. However, he has proved how much he can learn and we believe there is more he can do. We have seen him transform completely and become more outgoing. The shyness he had as a young child is slowly going and he has physically “uncurled” so now he will stand up straight.
As he is continuing to learn new skills we hope Andrew can continue at Henshaws so they can nurture and build on his enthusiasm for learning new things. Our eventual hope is that Andrew can find somewhere to live independently of the family once he leaves Henshaws.
We have nothing but praise for all the staff at Henshaws Specialist College. As well as the excellent teaching, and support from the residence staff, Andrew has been able to access professionals in Speech and Language Therapy, Occupational Therapy and Physiotherapy who can share their knowledge about Andrew to create a holistic approach to support and benefit him in all areas of his life. It is this that has seen him make such progress.
Andrew has developed great relationships with many of the staff who support him at College. There is a bond there, he looks comfortable and content in his surroundings and we can see in his demeanour how happy he is.
As parents, Henshaws has given us complete peace of mind. Knowing he is safe and well cared for and getting the best education he can – it’s really more than we could wish for.”
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