Help keep Ru­dolph fund go­ing

The Peterborough Evening Telegraph - - News -

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.

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.