December 2009

CHECK THIS ISSUE FOR THIS YEAR’S AMN DAY AND THE FAMILY WEEKEND GET TOGETHER, NEWS ON OUR WEBSITE, SAINSBURYS, FUNDRAISERS & MORE

Dear all,

Well, it’s been a hell of a year and I must say that I had no idea just how difficult it would be to get over

Ayden’s bone marrow transplant (still not quite there but nearly) as well as dealing with Alex’s surgery. We

are well and truly looking forward to an incident free 2010.

Once again, I find myself apologising for the late delivery of what should have been the June and now fi-

nally December edition! However, I know you all appreciate that sometimes I just can’t do all I want to in

the time I set myself (oh for an extra few hours to the day!). This year has been especially difficult as we

have had major changes to our care package resulting in many days of training up new people and as many

with no help at all—hence the huge delays in production of the newsletter.

It was lovely to see so many of you at the family weekend get together back in May and to have such won-

derful feedback on the event. An overview of the weekend and news of next year’s event are inside. Thanks

also to all those who came to the AMN Day—again a report is inside along with news of next year’s event

which, after feedback from our members, will be combined with the weekend. We are currently working

hard to ensure we have the funding necessary to put on the event again next year especially as we’ve al-

ready booked the venue! We have recently added Lorraine to our team of volunteers who is helping me with

writing endless reams of letters to organisations who give grants to charities. My mother has also jumped in

and is writing letters to various corporations and workplaces in the hope they might sponsor a place for one

person to attend the weekend. Unfortunately with the recession, it’s a tough time for fundraising in all re-

spects at the moment, so thanks again to all of you who continue to fundraise so tirelessly for us, I cannot

express enough how valuable your continued contributions are.

I must also mention the exciting news about gene therapy and ALD research—a copy of the article is

enclosed for anyone who has not yet read it. Huge thanks must go to Mark Liley, and his charity Oliver’s

Army for assisting the funding of this research. More about this inside.

Finally we have news on various projects we are working on for the year and which will hopefully bring more

publicity, awareness and funding to ALD Life.

Thank you all for continuing to support us and we look forward to moving things forward for the future,

SARA, ALEX & AYDEN xx

NEWSLETTER DECEMBER 2009

THIS NEWSLETTER IS DEDICATED TO THE FOLLOWING WHO HAVE SADLY PASSED AWAY FROM ALD:

RUBEN DANIEL MIRAMONTES JR 6 NOVEMBER 2008 AGED 12

JESSE CARLJAMES LIGHTFOOT 31 JANUARY 2009 AGED 17

TIMMY FOX 7 APRIL 2009 AGED 13

SEBASTIAN PECORINI 13 APRIL 2009 AGED 10

JOSHUA RONQUILLO 10 JULY 2009 AGED 7

JOHN MICHAEL RODRIGUEZ 16 SEPTEMBER 2009 AGED 13

FUND RAISING GIFT AID Under the Gift Aid scheme, charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer.

Between 6 April 2008 and 5 April 2011, the government will also give UK charities an extra 3% on all eligible donations.

This ‘transitional relief’ does not affect your personal tax position.

Enclosed is a new gift aid form for you to complete and send back to us if you are ever in a position to donate to us and

gift aid is relevant to you.

You will also note that on our sponsor forms there is an option for people to tick if they are eligible for gift aid—it is

very important that if this is ticked we have a full name and address for that person or we will be unable to claim back

the gift aid.

I went to a conference earlier this year which clarified the position on what you can claim Gift Aid for. Those of you

organising events may be interested to know that if you don’t charge an admission fee (gift aid cannot be claimed on this)

for fundraisers such as concerts, but instead have a suggested donation amount, you can ask people to fill out a gift aid

form and we can then claim the gift aid for this. Also, if you are holding a raffle or similar at an event, if you instead

have a prize draw with a suggested donation for entry we can also claim gift aid on these. For further details on the

logistics of doing this please contact us and we’ll send you the relevant information and forms etc. Gift aid may be a bit

of extra paperwork but it is so worthwhile to do—for example if someone donates £10 this turns their gift into £12.50,

so ten donations of £10 would mean gift aid of £25, a hundred donations of £10 would mean gift aid of £250 and so on.

A big thank you to the following for

their fundraising efforts this year: Stella Symons Charitable Trust £250

Worshipful Company of Armourers and

Brasiers £500

Carmen’s Benevolent Trust £1000

Saint Bede’s School £176.42

Memorial donations for Lisa Long’s

grandfather £160.35

Anna Robson’s “small” garden party £1504

Montague Arms in Peckham £386.53

Lodge Runnymede No 186 £928

Greggs in Prudhoe £300

Mrs D Scholes £25

Jeans 4 Genes £4,999

Girton College £146.28

Linda the line dancer £252

Order of the Eastern Star £200

Dr Triplett’s C E Primary School £400

Kinghams £500

Great Coates Primary School £243.54

ALD LIFE XMAS CARDS We do have Christmas cards in aid of ALD Life for sale in

packs of 10 for £2 each. Anyone wishing to purchase can just

send us an email or call and we’ll send out by return post (we’ll

trust you on the payment!). The message inside reads “With

every good wish for Christmas and the New Year”. The design

of the card is the

same as last year’s

and detailed below. If

you are receiving this

newsletter by post

there will be one

enclosed. Next year

we will have new

designs, promise!

NEW LOW IMPACT FUNDRAISING SCHEMES We have recently received an email inviting ALD Life to

join something called Clever Squirrel, a scheme to unlock

money paid out in pensions, insurance products etc. to

advisers which most people don’t have. It’s incredibly easy

to sign up and get started. Go to www.cleversquirrel.com

for more information or contact us for further details.

Thanks to a new contact, Karoline, we are now also part of

a scheme called Terracycle which gives money to charity

for Tassimo and Kenco packaging. Go to

www.terracycle.co.uk or contact us for further details.

XMAS FUNKY FUNDRAISER On Saturday December 12th ALD Life has a

fundraiser at the Gunnersbury, 590 Chiswick High

Rd (opp. Gunnersbury tube) London, W4 5RP. The

night will be a Paradise 9 (my partner Tyrone plays

lead guitar) Winter Soltice/Xmas Special with

proceeds going to ALD Life. Also playing are

Jeanette Murphy (beautiful voice) and Seretone

(pals of Peter Steadman who has AMN). If you’re in

the area do come along as it should be a great night!

ANYONE WISHING TO PARTICIPATE IN THE

MARATHON, GREAT SOUTH RUN, GREAT

NORTH SWIM OR GREAT NORTH RUN FOR

2010 PLEASE DO GET IN TOUCH RE PLACES.

WE HAVE SPECIAL RUNNERS PACKS AVAILABLE

INCLUDING FUNKY NEW T SHIRTS (SPORTED

OPPOSITE) WITH THE SLOGAN “RUN FOR

YOUR ALD LIFE”.

FUND RAISING SAINSBURYS & ALD LIFE I’m sure many of you know by now that we were chosen as

the local charity of the year by Sainsbury’s in East

Dulwich, London back in July. This is a huge superstore

and an excellent opportunity to raise awareness and funds

in South London. Already we have raised over £1000 from

store collections and a fun day. For Christmas we will be

selling our Christmas cards and raffle tickets and having a

bag pack day where children from Ayden’s school and

volunteers will be packing shoppers’ bags in return for a

small donation. The store are allowing us to hold a

fundraising event each month for a year and we hope to be

able to organise a prize draw for a trolley dash in the New

Year and a fun day in the spring/summer.

CHRISTMAS RAFFLE TICKETS Last year our first Christmas raffle raised £1203.

This year we want to do better—with the

newsletter you will have received a book of five

tickets. To be in with a chance of winning, send

them back asap in the enclosed envelope. If you’d

like more books to sell let us know and we’ll send

them out by return.

Prizes include a weekend for two at the Tower

Bridge Hilton Hotel, £200 cash, a Gisela Graham

Christmas water globe and others, including

paintball tickets and bottles of wine.

Sponsored bike ride Alan Hoare of Burgess Hill in Sussex had a double hip operation nearly two years ago and is a good friend of a local family with two boys affected by ALD. To celebrate his return to bike riding he decided to enter a local twenty mile bike ride and donate all sponsorship to ALD Life. Alan raised a magnificent £523.80 for us.

Iron Man 2009 Craig Naidoo and Tom Barrett took part in the vigorous Iron Man challenge in Nice, France on June 28th 2009 and raised a whopping £1,426.59. The event included a 2.4 mile swim, 112 mile bike ride and a 26.2 mile run

London Marathon 2009 Lucy Tipper, a carrier of the gene, raised a superb £853.99 for us. Congratulations are due as well for her marriage earlier this year. Massive thanks also to Greg Kat (who also did the Great North Swim) and raised £455.

Great North Swim A huge thank you to our swimmers in the Great North Swim held at Lake Windermere in Cumbria on Saturday 12th and Sunday 13th September: my partner Tyrone, Greg Kat, Saz Denny, Justin Laidler, Samuel Stirling, John Murray, Joe Selwood. Everyone thoroughly enjoyed the event and the atmosphere was fantastic. Saz and Tyrone are already planning on doing the event again next year having found the swim far less daunting than they had originally thought. Total raised so far is £2,835.68 with more to come.

Glasgow Half Marathon Big thanks to Robert Jones who raised £302 for us plus a matched donation of £287 from his employer’s, Arco.

Great South Run This event took place on Sunday 25th October and we had a grand total of 7 runners this year: my partner Tyrone and Bernie Besnard who both ran for us last year; myself and Jennifer King walked the distance, and Claire Thornton, Louise Waller and Simon Hoare (Ayden’s father) ran along with Tyrone and Bernie. It was a long walk, incredibly windy and my legs ached for a few days after but we did it! The atmosphere was fantastic and the roadside support a huge boost, so if you fancy it for next year do let us know—I’ll send an email round when we have our places for next year confirmed. A grand total of £2,568.20 has been raised so far with more to come.

Sponsored slim Many thanks to Janet Craven who lost an incredible 21lbs on a sponsored slim and raised £700 for us. Janet’s husband sadly died from ALD just over eight years ago.

Wedding Dress Day Congratulations to the lovely Kim Apps who wore her wedding dress for a day following an idea from Take a Break magazine. She went shopping, bingo and the pub fully clad in white and raised £666 for us. THANKS SO MUCH TO ALL OUR PARTICIPANTS IN SPONSORED EVENTS THIS YEAR AND VERY WELL DONE!

Tom Barrett completing the Iron Man challenge Tyrone after the Great North Swim

Kim Apps doing the shopping in her wedding dress!

From left: Louise Waller, Jenny King, Bernie Besnard, Sara and Claire Thornton before the Great South Run. And yes it was flipping windy!

SPONSORED EVENTS 2009

ALD LIFE WEEKEND This year’s weekend get together was a resounding

success with feedback indicating that we had just

about got it right for most people. We held the event

at the Tower Bridge Hilton Hotel in an area steeped in

London’s history with Tower Bridge, the Tower of

London, HMS Belfast, the South Bank and many other

sightseeing opportunities close at hand. On the Friday

evening we had an ice breaker quiz where everyone

was split up into teams. Winners of the adult quiz was

the combined big cat team and winner of the kids quiz

was Kaylee Gooch.

Our compere for the evening was Fiona Branson, an

actress friend, who also organised a drama workshop

for carers on the Saturday morning. We also had

someone from the Expert Patient Programme available

although a rumour that the planned session was

cancelled unfortunately meant that it did not go

ahead! On Saturday afternoon we took the children on

a trip to the London Aquarium along with various

volunteers so parents could have a break. Meanwhile

adults enjoyed the benefits of a pampering session.

The evening saw Kim Apps doing her infamous raffle

raising almost £400 with almost everyone winning a

prize, and Anna Robson received the prestigious title

of our very first ALD Life fundraiser of the year.

Nicola Taylor provided entertainment for the children

using her stage make up techniques to give them some

excellent “Casualty” style wounds as well as some

prettier face painting for the girls.

On Sunday morning we took a minibus full of eager

shoppers to visit our two south east London shops

escorted by our two managers, Lee and Elle. This was

followed by a short diversion to the pub and back to

the hotel for our farewell lunch.

Next year’s event will be from Friday 28th May, again

at the Tower Bridge Hilton Hotel (booking form

enclosed) and will incorporate the AMN Day on the

Friday—further details on page 10.

WE LOOK FORWARD TO SEEING YOU.

ALD LIFE CONTACT INFORMATION:

ADVICE LINE/OFFICE - 020 8473 7493

PENGE SHOP - 020 8778 1144

SYDENHAM SHOP - 020 8659 7171

EMAIL – [email protected]

PO BOX 43642, LONDON SE22 OXR Please note the advice line is at Sara’s home so there

may not always be an answer, but leave a message and

she will always get back to you. The shops are open 9.30

to 5.30 Monday to Saturday and 11 to 5 Sunday.

Above Elle & Dave Payne, right Alfie & Anna Robson, below Chris Ogden with

mother-in-law Jemima and wife Sheina

Above Deodath Seegobin, Andrew Cockayne & Cherie

Taylor, right Hayley & Peter Steadman,

below volunteers Saz (did the Great

North Swim for us), Simon and Vicki

GET TOGETHER 2009 Left Dave Payne & Danny Apps, right Donna Laidler, Sabina van de Wattyne & Gabby Davey

Right Annie Elmore & partner Mark, below

Jon, Karen & Cameron Harrison &

carer, Sue

Right Sara & Tyrone

Right Sabina & partner Colin,

below left volunteers

Trisha & Krissy with Sara &

compere, Fiona Branson. Below

Steve & Elizabeth

Phipps

Above from back left Luke, Janice & Nigel Gooch, Max, Steve & Elizabeth Phipps & Kaylee Gooch Shop volunteers John & Maria and managers Lee & Elle

Left Tony, Luca & Marie Risolino, right Kathy Hemestretch & Donna Laidler. Below Denise & Elana Woodham & Pearse Hemestretch. Below right Colin Taffe

Below Rebecca Harris & Natalie Fynn

Above Lacie, Scott & Nicola Smith, right Connor Smith & Rita Steer, below volunteers Elwell, Tyrone & Jim

Right & below right Deb Clark

and Donna Laidler (before & after!)

Below left Anna, Alfie & Mark Robson, centre Pearse Hemestretch

Left Anna & Mark Robson, right Mark, Danny & Kim Apps, below Sharon & Hayley Steadman

Below Nigel & Janice Gooch

Below volunteer Natasha & Alex

Below left Kim Apps & Alex, centre Tommy, Jessica & Hayley Steadman, right Kayshree Hetai & volunteer Trisha

Below Sara & Anna Robson with her award

Below Kayshree Hetai & Deodath

Above Emma Thomas & Harry Cass, Jon, Glenn & Karen Harrison. Left Jemima Davey, Nicola Taylor, Annie Elmore & Alfie Robson. Below left Cherie Taylor, below trustee Mike Hensby & volunteer Elwell

Left Peter Taylor

Right Jemima &

Sheina Ogden, far right Elle

Payne, Kim Apps, Annie

& Mark

Left Deo Seegobin, below Anna, Alfie & Mark Robson, Mark & Kim Apps

Above Mark & Annie Elmore Below Jemima Davey

Left Ayden

Right Nicola Taylor

Above Glenn Harrison & Connor Smith

Below Jessica Steadman

Right Kaylee Gooch Below Tommy Steadman

Below Max Phipps

Above Luke Gooch

Left Glenn Harrison & Callum Smith, also right at the Aquarium Below left Kaylee Gooch, Max Phipps & shop volunteer Maria at our shop in Penge. Below right Kaylee Gooch at our shop in Sydenham.

Left the Penge shop, below left Julia Harris and below Kathy Fynn at Penge

Above right Alfie Robson and shop manager Lee. Below left Lee & Marie Risolino and below Marie, Chris & Sheina Ogden at Sydenham.

AMN DAY 2009 & 2010 Once again, ALD Life trustee Chris Ogden organised a

stimulating day full of information, practical advice and news

from researchers. A full report on the day is enclosed with

the newsletter.

After asking you how you’d feel about combining the AMN

Day with the Weekend Get Together, we had a unanimous

response that this was a popular idea.

So next year the AMN Day will be held on Friday 28th May

2010 followed on directly by the weekend get together. Both

events will be held at the Hilton Hotel, Tower Bridge and we

hope that this will encourage more of you to participate. A

booking form is enclosed so please get these back to us

quickly as places will be limited. All are welcome, including

those from abroad, and, as usual, the event is free although

you can make a contribution if you wish.

We also hope that by having a wider sample of those affected by AMN and ALD at the AMN Day we can really tug on the

heartstrings of the scientists and researchers and give them a bigger incentive for their work. We also want to bridge

the gap between those suffering from ALD and AMN—we are very aware that some sufferers of AMN are reluctant or

feel guilty about meeting the boys with symptomatic ALD and we hope that by bringing them together there can be a

greater empathy and understanding between the two disorders. After all, they are both caused by the same gene and a

lot of families will have instances of both in the same family.

We very much look forward to seeing you at our combined event next year.

HOW YOU CAN HELP We are at present concentrating on asking businesses to sponsor places for the weekend—if you work for a company that

might be interested in this (they would of course be acknowledged on our website) then please do let us know and we’ll

write them a letter. One of my old employers has already agreed to sponsor a place for 2010 and we hope to encourage

more businesses to follow suit.

USEFUL HINTS ABOUT AMN FROM AMN SUFFERERS

HAVING TROUBLE WITH LOCAL

SERVICES?

Tom Wilson, an AMN sufferer in London wanted to inform

everyone that he has been offered regular hour long

physio sessions at his home every fortnight. He also has

useful input from occupational therapists on areas such as

home modifications, retraining for work and counselling,

plus assistance in applying for benefits such as Disability

Living Allowance. We all know that services differ from

area to area even though they shouldn’t, but it is always a

useful weapon when dealing with local authority services

to be able to state what is offered elsewhere.

So, if you’re having a problem accessing services ask your

PCT if there is a coordinated disability service and get

what you need. As we all know, there is always a lot more

out there than we’re told about. Tom is more than happy

to chat to anyone who would like to know more and can be

found on our contacts list.

Anyone with any useful tips for living with ALD or AMN

please do get in touch—your information is always gladly

passed on and sharing advice and information is what ALD

Life is all about.

FUNCTIONAL ELECTRICAL STIMUL-

ATION (FES)

AMN sufferer, Cherie Taylor, has found that FES has

helped her enormously. She uses it to assist her walking and

to correct dropped foot—a common symptom with AMN as

well as other disorders. FES uses self-adhesive electrodes

places on the leg and connected to a small stimulator which

sends impulses to the nerves not carrying messages

correctly. These impulses are activated by a pressure

sensitive switch in the shoe. Ask your physiotherapist about

this treatment or go direct to the supplier at

www.odstockmedical.com, tel. 01722 429 065. Alternatively

talk to Cherie (she’s on the contacts list).

Another AMN sufferer, Deirdre Corr, has asked us to pass

on details of a massage system she’s recently invested in to

he l p w i th t he mu s c l e

spasms in her legs. For

further information go

to www.cyclo-ssage.com

or you can contact

Deirdre through

us.

FUTURE PROJECTS We have a lot of plans—most of which have been delayed by the various trauma my boys have suffered these past two years.

However, I am keeping everything crossed that we can now move forward and thank you all for bearing with us.

Our website has been updated—this is going to be a lengthy process, not least because much of the work is waiting for me to

supply text etc. The forums will be up and running soon and we hope to develop the site into a useful and diverse tool for all

affected by ALD and AMN to use. We are also working with a video production company who are ploughing through hours of the

Hunt family home videos to produce a short film to include on the home page. This film will aim to be a hard hitting and realistic

portrayal of the effects of ALD and will hopefully encourage visitors to our website to support the charity. We will also be using

it as a tool to encourage corporate entities and grant giving trusts to support us and for showing at relevant fundraisers.

We have also had our leaflets updated courtesy of our lovely printers DG3 (a million times better than my original effort I’m

sure you’ll agree!). Huge thanks to Nathan Finch for organising a stupendous discount and to the design team for donating their

expertise. I’ve enclosed a couple of the new leaflets with the newsletter.

We are also working with DG3 to produce a series of practical information leaflets to cover all aspects of ALD and AMN from

the consequences of being a carrier right through to having a boy with full symptoms. We will of course be asking your opinion

on the content of these leaflets and will be contacting you for feedback on the first draft when they are done.

GENE THERAPY BREAKTHROUGH I doubt there’s many of you that have failed to

see the incredible news of the breakthrough in

gene therapy recently published. Major

contributor to this research, Mark Liley, who set

up the charity Oliver’s Army following the sad

death of his son, Oliver, at age 14, has kindly

answered some questions to clarify the

implications of this research:

I asked if this meant that bone marrow transplant

would be replaced by gene therapy. I was told

that at present bone marrow transplant is still a

very risky procedure due to the aggressive

conditioning; the benefit of gene therapy is that

there is not the rejection associated with bone

marrow transplant.

I asked if it could potentially be used for

symptomatic boys. Mark answered that, sadly, it

cannot be used for children already presenting

symptoms and so is still purely a prevention therapy.

I asked what the implications for AMN sufferers

were. According to Mark, Patrick Aubourg is

hopeful that it can be used for AMN patients but

there is currently no timescale for this.

ALD LIFE & OLIVER’S ARMY—

WHY TWO ALD CHARITIES IN THE UK? I think it would be prudent at this point to clear up any

confusion there may be between supporting ALD Life and/or

Oliver’s Army.

Oliver’s Army has been set up purely as a research funding

organisation and if you wish to only support research then

this is the place you should send your money. Mark is a very

astute and successful businessman and has ploughed a lot of

his own finance and acumen into the charity as well as

purchasing a pub to hold fundraisers in. He has an excellent

relationship with researchers and other like minded

organisations and is very active. Some of you may remember

that Mark was once a trustee for ALD Life, however he did

not feel comfortable with our support and advice role and felt

strongly that all money raised should only go towards

research. We were sad to lose him but his stance is very

understandable.

ALD Life is more centred towards supporting those currently

living with the effects of ALD and AMN. As we grow we want

to be able to do more for research, but feel strongly that for

now our modest resources are better spent helping those

with the conditions find a way to deal with their situation. We

also work hard to raise public awareness as much as possible

through our website and other ventures. Money sent to us is

spent purely on supporting families (all administration costs

etc. are met through the profits from our two charity shops

and my services are completely voluntary). Anything left over

we will and do happily send over to research projects vetted

by our trustees.

The last thing either ALD Life or Oliver’s Army want to do is

cause confusion amongst sufferers of ALD and AMN and we

hope that you will remember that both charities are working

alongside and not against each other.

ALD GROUPS ON THE WEB There are a clutch of different groups out there on the

web for those who are adept at the social networks

available online (personally I’m terrible at them as anyone

who tries to talk to me on Facebook will know!). Here are

some links to groups you can find online that are purely for

ALD and AMN sufferers:

ALDkids at Yahoo www.groups.yahoo.com/group/ALDkids

AMN on Facebook search AMN Forum and you’ll find it THE STENNIS FOUNDATION HAVE JUST

PUBLISHED A COOKBOOK FOR THOSE WITH

LEUKODYSTROPHIES. GO TO

WWW.STENNISFOUNDATION.ORG FOR

DETAILS

Registered office 16 Marcus Garvey Mews, London SE22 0RG Registered charity no. 1106008

A company limited by guarantee incorporated in England Company Registration no. 5142341

Billy George Apps, age 7

Daniel Bray, age 6

James Cowpland

Devin Dreher, age 13

Ronald Edwards, age 68

Jonathan Mark Ellerby, age 41

Timmy Fox, age 13

Sudhir Garg, age 42

Mike Garrett, age 55

Alexander Harrison, age 8

Nora Hemestretch, age 89

Aaron Robert Hultman, age 9

James P Kane sr, age 53

Christopher Andrew Keenan, age 10

Jesse Carljames Lightfoot, age 17

Oliver Liley, age 14

George Ross Martin, age 8

Ruben Daniel Miramontes, age 12

Nathan Kurtis Morganroth, age 6

Donald Morrison, age 45

Lorenzo Odone, age 30

Jonathan Lee Padgett, age 28

Vivek Palanisamy, age 11

Joseph Payne, age 6

Sebastian Pecorini, age 10

Lawrence Prifti, age 8

Bailey Robinson, age 7

John Michael Rodriguez, age 13

Joshua Ronquillo, age 7

Stephen Scanlon, age 36

Michael Strangwood, age 13

David John Suppan, age 10

REMEMBERING DEPARTED FRIENDS AND FAMILY

NEVER FORGOTTEN ....

Ruben Daniel Miramontes jr and his final resting place

Brothers from left, Rob Downer-McGlone, Sebastian Pecorini and Tom Pecorini

Timmy Fox John Michael Rodriguez

Some words from Ruben’s mum, Valerie:

“First and foremost Ruben loved his siblings and his Dad

and Mom. All he ever wanted was to see his family happy

and loving one another. He didn’t care about toys or

material things and he felt everything with his heart and

soul. Everyday we told him how much we loved him and how

we would always be together and take care of one another.

He needed to know we were all going to be alright.”

Some words from Sebastian’s mum, Diana:

“Sebastian Pecorini, aged 10, died on Monday April 13th

surrounded by family at his home. He left behind brothers

Rob and Tom and mum, Diana. Sebbie was a thoughtful and

loving child who was known for his sunny and cheerful

nature. He was so gentle and kind and had many, many

lovely friends. It is a great loss to the world that Sebbie

isn’t in it anymore. He will be sadly missed.”