Help keep Rudolph fund going
LOUISA and Ian Collins took their youngest son Sebastian on the trip.
The four-year-old has a rare genetic metabolic disorder called galactosaemia, which means that having dairy lactose or galactose (found in tomatoes and watermelon) will cause cataracts, liver damage and brain damage and would eventually kill him, slowly, over a week or so.
He also has asthma, autistic spectrum disorder and severe sleep problems as well as behavioural problems.
The couple’s oldest son Jack (11) is a recognised young carer who misses out on a lot because of the amount of care and attention his younger brother needs.
Unsurprisingly, the family don’t have the chance to do much together because of Sebastian’s problems.
Louise said: “When the opportunity to apply to the Rudolf Fund appeared I thought we would go for it, never expecting anything, and originally there was no space.
“But because a family pulled out, we were given the chance to go instead and jumped at it. John and Judy Fox came to visit us to sort everything out and to meet us, and they were such a nice couple – very down to earth and friendly and so kind.”
Louisa wrote an extended letter about the family’s experiences. Here are a few snippets:
When we get to the restaurant we’re taken to a table and the waitress eventually brings over plenty of dairy-free food for Sebastian. We’re sat at the table and who should come out but Goofy!
“When Goofy sits down next to Sebastian, tears are in my eyes at the look on Sebastian’s face.
“We get a photo and autograph and Goofy moves on to meet another special family. Next round is Rabbit, then out comes Mickey Mouse! We are so excited. We also get to meet Friar Tuck, Gepetto and then – there in front of us is Sebas- tian’s favourite character ever, Pluto!
“We get to meet and hug Pluto and get his autograph. It’s just a wonderful moment to see Sebastian so happy and smiling.”
“We run into another family who we end up spending the rest of the day with – another family with a boy with Asperger’s.
“We swap stories again, and I think we’re all finding it wonderful to talk to people who truly understand how autism and ADHD work and who see that our children are misunderstood – they are not naughty intentionally, they cannot help the way they are and they are wonderful because of it.
“Ian is bonding with little Finn. Finn is a lovely six-year-old boy with ADHD and seems really taken by Ian. I am amazed at how Sebastian acts with all the other children – he seems to want to interact with the ones from these families, especially Kieran who is seven.
“They begin to form a little friendship, something Sebastian does not do under normal circumstances.
“Jack and Niomi (who is ten and is Finn’s big sister) are getting on very well and tell us that they are now boyfriend and girlfriend! I think that because they are both siblings of children with disabilities they have found some common ground – somebody who they know understands them.”
“I am fighting back the tears as I say goodbye to the amazing people we have met on our trip. Saying goodbye to Judy and John was very difficult. knowing this could well be the last trip they ever make really moves me.
Then I see my friends and I look at Ian and realise we’re all in tears. We’v e all been moved by this trip of a lifetime, this gift that has been given to us by such amazing people. We are so lucky. I will always remember – this truly has been the most amazing, wonderful, outstanding, life changing trip.
A TRIP TO PLUTO: Leo Waites and Sebastian Collins.