At nearly two years old, Patrick Langford has just learnt how to smile.
But the heartbreaking fact that mum Vicki can’t forget is that she doesn’t know when he will flash them his final smile.
Patrick had a rare brain disorder called pontine tegmental cap dysplasia which has left him severely disabled with a short life expectancy.
The tot, who will turn two in March, has a twin brother Fredrick – or Freddie – who was born without the condition.
And Vicki’s friend Allison Meer is determined to help the family make the most of their time left with Patrick, by raising funds to send them on a holiday together.
Allison, 34, first met Vicki , of Ilkeston,when their daughters Rosy and Phoebe, both students at Chaucer Infant School, made friends.
She said: “We grew closer and one day were talking about holidays. Vicki said how much she would love just one trip with her family that included Patrick, so they could create lovely memories to cherish once he had passed.
“I have suffered a similar tragedy and could put myself in her shoes and I really wanted to try and help. I suggested fundraising to which Vicki agreed, but she just doesn’t have the time to organise it all with Patrick and Freddie, and then her and her partner Dean’s other children to care for.
“So I got to work. Any extra money I can try and raise will go towards helping to pay for Patrick’s funeral, which unfortunately has to be considered.”
Allison’s daughter is holding a cake sale at school to try and raise cash to hit the £5,000 target, and Allison is doing the same. She will host a three-day cake sale at La Creme Nails and Beauty on Nottingham Road, from February 22 to 24.
She added: “ We have had so many cakes donated from local businesses in Ilkeston including Tesco, Delicious Cafe, Stacey’s and Creative Occasions.
“I really hope people pop in and show their support, after all – how would you feel if it was your child?”
Vicki Sansome, 28, noticed something was wrong with Patrick’s kidney at the 20-week scan and after further investigation found that his brain was not developing as it should.
The couple were advised that a termination may be an option they would like to consider, but Vicki was adamant that was not the option for them.
She said: “The news was absolutely heartbreaking, you’re so happy to be pregnant that you don’t even entertain the idea you could be told something like that – I just didn’t want to believe it.
“We were taken off to a side room and the medical staff explained the risks to Patrick, and to Freddie. I had weekly scans to monitor their progress and at 32 weeks pregnant had some more tests done. At one point I was told Patrick was ‘incompatible with life’ – no mother ever wants to hear that said about her child.”
Patrick was delivered by C-section and while every day is unpredictable, Vicki says he has developed more than first expected.
“The doctors didn’t think he would ever smile or swallow and he’s managed to do those things which we are immensely proud of. But unfortunately there are many things he can’t do, such as hold his head up, walk, eat for himself – he is tube fed. We have known from the beginning his condition is life-limiting, but I don’t think it makes it any easier. We have been told he has between six and 12 months left to live, but no-one can really be sure, we are just trying to take each day as it comes and focus on the positive points.
“Planning a holiday and unfortunately also the funeral, are important to us though. We have discussed it as a family, and his older siblings have requested keepsakes of him and want to remember him in a happy way.
“Giving Patrick, and all of the family, a holiday and making precious memories together is all we can try and do – we want to make his short life as special as possible. We have had so much support from people including Allison, and I can’t thank people enough. I hope by sharing my story I can also help raise awareness for parents who have children with debilitating conditions, no-one understands what it feels like until you’re in that situation. You can feel so lonely, but I assure you you’re not alone.”
To donate, visit www.justgiving.com/crowdfunding/Patricks-holiday.