I have been reading your posts for a while now but have never posted
myself. My husband and I have a daughter diagnosed with Weaver
syndrome at the age of two. She is now eight years old, and doing
great. She is 5'5" tall and weighs about 117lbs. She wears a shoe
size of 13 in womens. We were told by Dr. Weaver at our last visit
in December that she will stop growing when she hits puberty
(between 9 years and 11 years old), then have another growth period
after puberty. This makes us wonder how tall she will finally be.
She has slowed to 4 inches per year now. Abby is very healthy,
unlike many of your children. We have been very fortunate to have
only allergies, colds, pneumonia, and some kidney infections. Abby
is in the 3rd grade and doing very well, testing at the low range on
her grade. She still reads on a 1st grade level, but does very
well. She has a great memory for things that interest her. She is
very social and loves everyone, always kind to everyone. She is
very sensitive also, picking up on emotions very quickly. Abby
plays basketball at our church in the Upward Basketball program, her
height is an advantage! We were able to discontinue her physical
therapy and occupational therapy last year because of her progress.
She continues to have speech therapy to work on sentence formation.
We have always pushed Abby to do her best and never give up. We
NEVER expected less of Abby because of the syndrome. There were
many times she would be tired and want to give up in therapy or
working in school, but we would encourage her to continue and it has
paid off. She has overcome many things in her eight years. Only
God knows what the future holds for Abby and the rest of your
children. When we saw Dr. Weaver in December he ask us to
participate in a gene mapping study so they could possibly identify
the gene to Weaver syndrome. This is the second study we have
participated in, the fist was when Abby was four. Dr. Weaver has a
goal to chart information on Weaver syndrome this coming year and
make it available for all families with Weaver syndrome. It would
be helpful for everyone to let him know how your child is doing and
some of the history of your child. He needs updated information to
make this happen. It is going to require everyone to get that to
him. He believes there are about 50 families now who have
documented cases with Weaver. I would love to see this information
current so we all can be informed. You can email him at:
dweaver@... May God bless you and your family with good
health and love this new year.
Greta Holmes
Bowling Green, Kentucky