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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.”