From Jeff's Mom Re: Hi C. /Jeff

January 7, 2004

Hi everyone, I am Jeff's mom and just thought I would add a experienced mother's

point of view of this subject. When Jeff was first diagnosed we were all

extremely upset and lost as there just wasn't info available to us.(we had no

internet) On the advice of our doctors we limited Jeff's activities and time at

school. We did what we thought was best for him to protect him from

injuries/complications etc. As they say hindsight is a wonderful thing. And

what we learned from hindsight was that even with Jeff being extra careful and

not allowed to participate in sports and missing lots of school didn't stop the

injuries from happening. All it did was cause emotional distress. Jeff does

live with a lot of pain now but he is much happier. I can honestly say so am I

.. I know how much it breaks your heart to see your children go through so much

but a lot if it is going to happen anyway and as Jeff says if his shoulder is

dislocated rollerblading at least he had fun, all he has to do is sometimes roll

over in bed and his shoulder will dislocate, it is just going to happen. He is

living life to the fullest and yes does have to pay the consequences for it

sometimes but when he is feeling good he is always out with friends, or studying

for courses he is taking a university which he loves attending. Yes some days

are extremely difficult but that just makes the good days even better.

I do have to thank Jill and ceda so much for helping us when we got internet

access. Armed with knowledge helped us understand EDS and let us understand as

Jeff said he has EDS it does not have him. He was dealt a bad hand but is

making the absolute best of it. Some of his dreams are just not ever going to

be possible so he made new dreams, and I am one proud mom.

Donna

Re: Hi C. /Jeff

From: J. Grantham-Manitoba CEDA

Hi C. and to all of my CEDA friends,

I have full authority to speak on this matter. However to be missing school

and the interactions with his teachers, friends and peers is a crucial thing to

ones self-esteem, self-worth and happiness levels.

We are consistently putting ourselves or our children into this little

protective " bubbles " but for what???

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Well Jeff, all I can say is I am so glad you were able to carry on and manage

in pain, to go to school and have friends. I only wish my child could do the

same. 14 months of being isolated is not fun and not a choice I would choose for

my child. I have not put my child in a " bubble " and I do not believe Jen has

either. I believe she is a competent mother, doing what is best for her child,

just as I am. I have only been here a year. I wish I knew you better to know

whether this is a honest try to help or someone sitting on a high horse. Sorry

if that offends you or sound rude or uncaring. But a mothers decision to keep

her child from school is one between her and her Doctors. I can only dream of

my son going to school in a wheel chair having friends, his first kiss, a friend

to call, and laugh at a joke. Giggle about what 16 year old boys should giggle

about. I am thank full 's boys can go to school, when they can. Enough

said. Cindy C.

January 7, 2004

Hi Donna,

It is nice to hear from you! I am glad to hear that Jeff is doing so well.

By its very nature as a syndrome EDS affects each of us differently. Jeff

is very fortunate to be able to lead such an active life. We too are doing

the best that we can for the boys. was just 5 when he was diagnosed

and was only 2. Each of the boys experiences very different

symptoms.

Other complicating factors (age and multiple allergies to meds) have made it

very difficult establish any level of pain management. The right pain meds

have allowed to lead a very active and busy life. You should have

seen on the ropes course this summer at Easters Seals camp despite a

subluxing collar bone! hit the target in archery without impaling

anyone!

Right now, big growth spurts and injuries have slowed him down when he can

tolerate sitting for more than 5 minutes at a time we will see him out doing

more once again.

Take care,

January 8, 2004

Hi Donna --

I read your email and wanted to let you know that I think Jeff has a wonderful

outlook on life and it is an inspiration to see someone embrace his life with

everything he has. To be that positive in the face of any condition such as

EDS is a gift to be cherished. I can certainly understand why you are " one

proud mom " .

Take care, Patti

Re: Hi C. /Jeff

From: J. Grantham-Manitoba CEDA

Hi C. and to all of my CEDA friends,

I have full authority to speak on this matter. However to be missing

school and the interactions with his teachers, friends and peers is a crucial

thing to ones self-esteem, self-worth and happiness levels.

We are consistently putting ourselves or our children into this little

protective " bubbles " but for what???

------------------------------------------------------------------------------

Well Jeff, all I can say is I am so glad you were able to carry on and

manage in pain, to go to school and have friends. I only wish my child could do

the same. 14 months of being isolated is not fun and not a choice I would choose

for my child. I have not put my child in a " bubble " and I do not believe Jen has