Parents Quotes from the Get Together

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Angela Blackburn from Middlesbrough

Sarah Maguire from Coleraine

Pat Porter from Mill Hill
Dave and Laraine Hougen from Alberta
Rob and Lesley Freeman from Essex

Bill and Judy from Blackpool
Nancy Ross from Connecticut

Clare Green from Stevenage said:

"Well Done Judy......I'm so glad we came up to Blackpool last weekend.
It was great to meet and talk with all the other parents and see the
children. I no longer feel quite so alone and frightened.

Best Regards, and once again Judy, your hard work really paid off this
weekend, THANK YOU."

Angela Blackburn from Middlesbrough said:

"We too enjoyed visiting Blackpool, the kids had a fantastic time at the do on Friday night, and they were both well behaved for our two kids. We were just disappointed that we couldn't stay longer, ho hum. Paul seems keen to attend the next one and me too, so I am all for another one."

Sarah Maguire from Coleraine, Northern Ireland said:

"Hi Judy and Bill, Dan and I have just got back home to NI. I cannot thank
you enough for all that you did this weekend. I valued it very much and it
was lovely to put faces to names.
take a rest now"

Pat Porter from Mill Hill, London said:

"Hi Jude Bill and Katie- we all got back safely too about 11 last night- the
boys stayed awake all through the flight and then fell asleep in the car on the
way home. Had to let them watch a video for 1/2 hour when we got in as having
to wake them to get them out of the car and trying to get them straight to
bed would have been a nightmare! However they were ready for bed when it
finished and were asleep again before I got down the stairs. John and I weren't far
behind them I can tell you. Poor old John had to go to work this morning while
the boys and I had a good long lie-in.

We had a great time with you all in Blackpool- the best thing for me was
meeting everyone face to face and being able to talk freely about our feelings and
how our kids are. I didn't get to talk to everyone at the do-as we arrived so
late (won't let John arrange the travelling next time!) but I was really
happy to meet those of you that I did get a word with.

All the entertainment that you and Bill arranged was great too. I was amazed
at how much there was to do at the Tower, of course John and Chris are avid
big thrill riders so the Pleasure Beach was a real bonus. We used the Sand
Castle tickets too where even Matthew didn't want to leave the slides, though we
had to as Chris began behaving dangerously while sliding- turning himself round
and going headfirst and finally stopping himself 1/2 way down- John came
hurtling down after him without knowing he had stopped (having been given the OK by the Lifeguard) and luckily managed to stop before clumping into him. Of
course the punishment was to leave the pools immediately but time was up anyway so
although it looked as if his behaviour had caused us to leave it wasn't
really. But what can you do- he's big enough to go down on his own and is a very
good swimmer but he can't be allowed to act dangerously- if it hadn't been John
behind him but maybe another child would they have been able to stop a nasty
accident? Anyway he was told NEVER to stop or mess on the slides EVER EVER EVER AGAIN- hope he got the message.

The hotel was superb- the staff was extremely courteous and very friendly and
the rooms perfect- I have absolutely no complaints about it at all- in fact I
would recommend it to anyone going to Blackpool. I will write to them and
thank them for being so accommodating to our group- so rare for people to be so
understanding and their total acceptance of us all as "normal" people was truly a
new experience for me. (I use the term "normal" in a very loose way when
talking about myself of course-lol)

We definitely need to do this again; John asked me if I'd got anything out of
it- I said I got loads out of it- just meeting other people who know what I'm
taking about without having to do the explanation first was a real
bonus. - and now I know we are definitely not alone which up until this group
was started was the worst feeling in the world.

Phil and Clare Charlie and Eleanor please feel free to get my number from
Jude if you ever need to phone or to arrange to come over- as you are really
local to us- everyone else is welcome too but you may have to travel a bit
further-lol. Mind you as we all made it to Blackpool I don't think you'd get lost.

Ok enough of me- Jude what time were you up to last night? Tut Tut you did
loads this weekend you should have been resting your back for your grand opening
. How did that go?

Oh you superstar you! I want a full report, any pictures, and a copy of the
press release- would you be able to get them on the site? So we can all see?
I was going to post to wish you luck but as we didn't get up until 10 this
morning and the boys were screaming for breakfast- I figured you'd already have
left home anyway- and to keep the peace I fed them.

SEE YOU ALL NEXT TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"



Dave and Laraine Hougen from Alberta, Canada said:

Hi everyone:
We finally arrived home last night. Roads were kind of icy and we were
soooo tired we decided to stay at my parents before returning home. The
jet lag has been brutal. I keep on waking up at 2 pm and then finally
doze off and then wake again at 5 am wide awake. Hopefully tonight will
be better and then I will be able to post all my pictures and have my
head on straight.

Thanks to everyone that attended the get-together. It was so nice to
put a face to an email address. We were so excited to see everyone. It
was an absolute wonderful experience. I hope that everyone will get the
chance to meet others with MDS. It is so helpful to be able to talk to
other parents.
I apologize for taking so long to write my feeling about the weekend in
Blackpool. The jet lag has been horrible and I am still having trouble
sleeping through the night. CariAnn didn't have any trouble so probably
the lack of my youth has something to do with it. Judy, your account of
the weekend on the web site was very well written. What a wonderful
experience for all of us to share together. Hats off to Judy and Bill
for a wonderful gathering! You two are truly the world's MDS hero! I
am so glad Judy was recognized as a local hero! It was wonderful to see
all your work recognized by your community. Congratulations!

Seeing all the 10 MDS children was truly a wonderful and emotional
expression of all the years of not knowing what to expect from this
genetic disorder. Hopefully the younger parents will have some peace now
after seeing all the wonderful children. All the children are different,
some will be better at facing the real world than others, but all truly
capable and independent. I have learned more in one weekend about MDS
than CariAnn's entire 25 years. We have been truly blessed to have Judy
and Bill to organize such an undertaking of planning the event in such a
short time. We endured years of tears and apprehension alone. The
tears have long since vanished, only in a bad dream, of not knowing of
what was to come in the future for CariAnn. It was so sad to see the
families reliving what we had experienced years before. I hope we helped
reassure them, but experience tells us that you will never truly believe
until it comes to pass in your own life. Such a pity to spend so much
energy in agonizing over things you can not change or control. When our
children are born we want everything to be perfect, then we all realize
that no one is perfect. I truly believe that perfection is only a myth.
We all have our problems and the MDS children have just one more thing
to make their life a little more difficult at times. I was told by the
head of CDSS that the extra chromosome is truly a blessing

I hope also that all the new parents will have the backing of friends
and family. It is so important so keep the family healthy and strong.
The extended family can make a big difference to the marriage and the
child. Many marriages have been broken by having a child with MDS.
It is a terrible shame. It was wonderful to see some of the
grandparents and siblings attend this weekend event. I am sure it will
help everyone understand MDS better. .

It was a difficult week for me in the UK in the emotional department.
Seeing all the wonderful children and meeting all the anxious parents
brought emotions buried so many years before. I am glad my fears have
been put at rest, since most were a terrible waste of precious years
with CariAnn. It was hard not to worry in the early days. I was always
filled with anxious thoughts and worries about how a MDS child would
manage. There are no real answers for a new parent since these children
vary in ability but all the children I have met seem to have the most
wonderful attitude toward life.

All the children bonded with one another as if it was instinctive. I
hope they will keep in touch with each other. There was not the usual
ucomfortableness as children usually react to strangers. They all
seemed to immediately feel at home with each other. Watching them
interact with other was an awesome experience. I wish more parents and
children could have attended but I know that there will certainly be
another get-together in the near future.

I miss every one of you that attended. It was wonderful meeting all of
you. I wish that we lived all closer and the children could get to know
each other better. Please encourage your child to join the kid's group
at I think the friendships made will
help everyone throughout their lives.

The sun and moon rises and falls with each one of our children. So as
one of the older parents at the weekend event I wish all everyone the
best. I hope I didn't bore you to death you with my emotional account
of the weekend. Hope to see you soon!

Hugs for all
(CariAnn's mom for 25 years)

PS. I have added many of pictures taken to the kid's site. Please
encourage the children to have a peek at all the wonderful smiling
faces! If anyone objects to their child's picture being posted in the
kids site, please let me know so I can remove them. I think I asked
everyone for their permission but I want to make sure it is okay with
everyone! Thanks!!!


Rob and Lesley Freeman from Essex said:

Excellent pictures, sorry I've been quiet, well you know me one of those
closet parents! It was a fun weekend and it has been a good reminder of
the fun we had. I would really be looking forward to getting together
again say some time next year, not sure about everybody else or the

Thanks for all that have sent there emotional feelings on the weekend. Bill
and I wrote a diary of the weekend but up to now we haven't put down our


Judy and Bill from Blackpool said:

I found the weekend very over whelming, anxious, happy,sad, all the things I
thought I'd feel.
Most of all found that we had a child like anyone else and for that short
time we didn't see Katie with mds .

Katie the happy child mixing with others she didn't know but got on
with,you would have thought she;d known them years, the children got on so
well ,and so did the adults chatting, making plans having fun.

I am finding it hard without you all , feel quite alone now but I know your
there probably feeling the same as I do
It's a very rare thing true friendships and I think we have this in our
group ,

So a big thank you again for coming to the get together , Bill and I loved
planning it and most of all meeting you all in a lovely warm caring and
friendly environment .

Katie's future now looks very positive we thank you for that seeing all
what our children are capable of I had my tears that I'm not ashamed of
seeing the older children do the most amazing things with there life .eg
travelling, work schooling etc

Maybe the doctors don't know the answers but you my friends do and I'm happy
with that,

Our next step now is to still make more awareness of MDS UK international
to fundraise donations etc to make us bigger and better with a brighter
future for our children,

I have the bank account and cheque book now ( MDS UK on it :) with funds of
£520 for us , which will be used for future work and get togethers

So my friends lets us get planning the next one ......... then we can all be
together again and one day we'll be noticed as MDS UK wordwide by
everyone and that day we'll be celebrating.

Nancy Ross from Connecticut:

I am so sorry that it took me so long to comment on the get together....but
here goes...
I can't even express how great it was to meet all of you. Judy and
Bill did such a wonderful job of organizing the weekend and it was
remarkable. We all had such a good time. Meeting all the kids really gave me such hope
for Keith and I would have flown around the world if that's what it took to
feel that way. Anyway, you all have a special place in my heart and I look
forward to chatting with all of you and to see you all again at the next get
together. What a great diary of the weekend on the website and all the photos!!!!
Keep up the good work Judy and thanks for all your love and support.