Lewis - Mosaic Trisomy 18 - 21 Years On
We have now been part of the SOFT Family for 16 years, that may confuse some as Lewis is 19 but he was 3 when we were given the diagnosis of Mosaic Trisomy 18. For those of you who were here back in 2019 will remember I likened life with Lewis to being on a roller coaster. Well, life has certainly been a roller coaster for everyone during the last 2 years with Covid and the changes it has brought, but certainly for us! At the end of my talk, I said what we wanted for the future. Well, at Lewis’s annual review we started the process. We knew it would be a rocky road, but we were prepared- or so we thought! We felt that Lewis’s best option was to go to a Residential College where he would further his knowledge in IT and Media, alongside being prepared for employment, learning life skills to help him live more independently in the future and hopefully become more confident in himself.
An application was made for the second time to Hereward College in Coventry, near enough to come home for weekends but far enough away to be too far for daily travel. Once again, they offered him a place but this time for a place on the Explorer Pathway which would include a Level one course in IT and Media! Hurdle one cleared. Hurdle two was cleared with the Annual Review and The Beehive stating that it would benefit Lewis. Hurdle three we fell at, as the Local Authority refused to fund. By this time, we were in Lockdown. I had both Lewis and Shona at home. No way was Lewis going to do the worksheets sent home (mind you to be honest I worked out they were aimed at someone less able). So, we concentrated on life skills, from day 1 of being home. I refused to get Lewis lunch, he had to prepare his own! Shona worked on schoolwork for 2 weeks before it fell apart and it was not helped by having Ryan home- no, not on furlough but he had resigned from his job in the February. Finishing yes, just as lockdown hit! Things were not going well!
Thankfully having finally managed to secure a Social Worker in September 2020 we did have 2 days a week where Lewis went to a fabulous, effectively Adult Day Care Provision. However, Craig the owner, was very forward thinking and has now set up a fabulous provision which not only provides adult supported living, and an adult day care provision, but has now just secured City and Guilds status so is also an education provision. Look at Support 4 Independence in Northampton. I have to say Craig and his staff are amazing and we have not ruled out this organisation for the future!
To cut a long story short, we ended up in Mediation with the Local Authority, that was a complete waste of time, so we moved to full Tribunal. Initially on our own but quite late in the day we commissioned the service of Gurvinder Samra at Shoosmiths. That was one of the best things we did. The next was on Gurvinder’s advice to commission Siobhan Aubin who is an Educational Psychologist to independently assess Lewis and boy what a great assessment that was. Gurvinder also located a great Barrister: Leon Glenister. Oh what a dream team they all were! Then add to that, the expertise of Sarah Hutt, the head of the Beehive (the provision Lewis had left in the summer) and Rosie Herbert, the Vice Principal of Hereward College, (the provision we wanted Lewis to attend). We couldn’t have asked for a better team and yes, we won! But the result was rather delayed and no, it was not due to Covid, but due to the Local Authority needing to supply corrected information which they had failed to do even though it was submitted at 5.30pm the night before Tribunal!
In light of the delay, Easter and all the disruptions of the year, ourselves, the staff at Hereward and Gurvinder all felt a September start was best for Lewis who has an added diagnosis of Social Anxiety. Sadly, the Local Authority wanted him in full time at Easter, but we all stood our ground and eventually compromised on 1 x 24-hour period per week, spent transitioning at Hereward. This worked well and was the least disruptive option for the existing students and residents also.
The end of June came, college closed for summer, and we started planning what Lewis would need. Eventually, August 31st came, and we settled Lewis into Hereward, the staff are fantastic, and Lewis settled a lot quicker than we thought, making some new friends in his class, but tending to keep himself to himself in the residences, but getting on well with the staff. His X Box follows him to and from college and its hilarious to watch him carrying it very carefully and the staff carrying his bags! We have already noticed some changes and can honestly say that we made the right decision for Lewis. Not easy and we do miss him, but know he is in the best place and that this is the best chance he has, to be as independent as possible in the future. Lewis wants meaningful employment and Lewis wants his own place and to live as independently as he can! We want to see Lewis happy and settled somewhere while we are still young enough and well enough to support him in that huge transition, we see Hereward as the steppingstone to that move! So, for now we will leave it there, but watch this space for future updates!
Helen Tarratt
Lewis - 2019
Unlike many of you, technically our trisomy journey didn’t start until Lewis was 3 years old, well at least that is when we knew what we were dealing with, prior to this our journey was one of unknown quantity just an endless round of appointments and tests all coming up negative. It was a tough 3 years, 16 days in SCBU, coming home, developing a dairy intolerance, severe oesophageal reflux, possible meningitis, severe respiratory tract infection, Malory Weiss tear, medications for this, for that and food thickeners, extra calories the list was endless in the first couple of years. Our paediatrician was very proactive and was quick to follow up any research we made and to also refer to a local geneticist and then Great Ormond street. Just prior to going to GOS Lewis underwent an Orchidopexy and a skin biopsy, not his first anaesthetic nor his last, he recovered from the surgery well and we headed off to GOS in the March, lots of tests and pictures were taken, they were baffled. By this time, I was pregnant with baby number 3 and undergoing extensive testing myself so when I got the call one day from GOS to say we have found it, Trisomy 18 and that was how they left us. I rang Nick straight away and he researched it and found SOFT UK and even better a conference in Northampton just a couple of weeks later.
Since that day our lives have been a roller coaster both medically and educationally, Lewis was in a mainstream pre-school and while it was evident there were some cognitive issues at 3 he was physically up with his peers although he tired easily. At age 4 he was poorly and a day case admission turned into a 10 day stop with paralytic ileus, bleeding, infection, blood transfusions you name it! He started Main Stream school in the September and this was when the problems really started. Following a really tough 18 months in the local village school where they completely denied Lewis had any problems, we removed him and his elder brother to another local village primary school and wow what a difference. Lewis stayed at Helmdon Primary School until he transferred to Secondary school age 11, this time however having had a Statement of Educational Needs since the end of year 2 we secured a place at a fantastic Special Educational Needs provision in Northampton – Northgate School Arts Academy where he has thrived. Medically during this time more ups and downs, hypothyroidism diagnosed, testicular failure diagnosed along with an ongoing Sinus Bradycardia. Lewis has always felt the cold and nothing has changed. Then we hit 16 and Post 16 education sadly Northamptonshire would not fund our first choice but Lewis has settled into Northgate’s Post 16 provision, The Beehive and we are not giving up we will get him to our first choice at 18 so watch this space. He is doing well though and the staff are thrilled with his progress.
Health wise we are currently undergoing further investigations into the Sinus Bradycardia following a faint one day and being found breathing but totally unresponsive the next and his heart rate being possibly as low as 35 bpm. So bloods, 12 Lead ECG have been done and as I write this we are waiting for a wearable recording machine/ event monitor to be available and an appointment for an EEG. It just means we are on edge when he has a shower and I can’t get him to make me a coffee anymore, well until we have got to the bottom of what is going on. Bearing in mind he has low platelets he won’t be able to be in the kitchen alone (we’ve just put tiles on the floor). Lewis being microcephalic is also undergoing investigations as to why – yes it is linked to Trisomy 18 but our geneticist has sent his blood and a further skin biopsy to Andrew Jackson in Edinburgh. The geneticist has also confirmed the diagnosis of Mosaic Trisomy 18 in order to satisfy herself as she was not the geneticist caring for him at the time and she wanted further confirmation.
This said Lewis remains a cheeky, stubborn teenager who is selective mute when he feels like it that loves Lego and technology, so the iphone etc are never far from his side if ever!
Lewis' mum Helen spoke at our 2019 Family Day about their experiences of caring for Lewis. She has kindly allowed us to share her presentation from that day here