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Update January 25, 2008
Michael’s open heart surgery went well! He did not have to stay
in the hospital very long..
He is now back in school and is doing wonderful! We went for his
follow up and the doctor said his heart is doing everything it is supposed to be
doing! Praise God..
The doctor also said that Michael is going to be able to play
sports if he wants to!! Please always remember
‘With God ALL things are possible’!!!!
Brandy
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Update: December 10, 2007
Michael is doing pretty good. He is in Kindergarten. He still gets OT, PT, and
speech. He is also getting extra help for fine motor.. Michael got to make a
wish with the Make a Wish Foundation. It was so awesome.
I've added a few pics below from our trip. Michael has been getting really tired
a lot lately. This concerned us about his heart. He had a heart catheter done
and it confirmed that he needs to have his second open hear surgery. The surgery
is set for Dec. 28th.. I will post an update after the surgery!
~Brandy
Michael 8-6-06
special olympics 2006
with Mam Maw and Mi Mi on a train ride (2007)
hanging out with his cousin Kevin
Mam Maw at her b/day party 7-2007
all his cousins and Mam Maw 7-2007
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Hello. My name is Brandy. My son is Michael. He was born August 6, 2001~He
is 4.
We live in Gladewater Tx. Michael was born with mosaic trisomy 13. He
was born 2 months early (not because of the trisomy)
We did not know until a month after he was born that he had it.. He had
holes in his heart and aortic stenosis.. he had open heart surgery at 4
months old .. we have to see a cardiologist once a year.. he is doing
great..
~ Brandy
Update 11-24-06
Michael is doing wonderful! He is 5yrs. old now. He is currently in Pre K.
He still gets speech and physical therapy.. He is going to be evaluated for
occupational therapy soon but in the mean time they are working one on one
with him and his fine motor skills. (Which is great cause he needs a little
extra help in that area).
We are now going to the cardiologist every six months instead of every
year.. the cardiologist told us that his condition (aortic stenosis) is
getting worse but that they want him to grow as much as possible before
doing surgery.
He is such an inspiration to us all! Thought I would give an update.. God
bless! ~Brandy
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Update August 2005
Michael is now going to PPCD (Preschool Program for Children with
Disabilities). He is doing wonderful.. he is in speech therapy and physical
therapy.. he walks fine although he wears inserts in his shoes to help him
with balance.. Shriners has told us that his legs turning in should heal on
its own by the time he's 7 or 8.. we'll pray that they are right.. He's
learning how to put his clothes on by himself.. he can do it but it takes a
lot of concentration.. given time I think he'll master it.. His speech is
getting better and better.. His school has helped with that a lot.. I
remember the first time he said a sentence I thought I was going to fall
over!! I was shocked! But it was awesome!! Since then he's continuing to
talk more and more.. We thank God every day for Michael.. I did not mention
anything about my husband, Mike~ he is a wonderful Daddy to Michael! And a
wonderful husband as well.. These children are such wonderful miracles!! God
bless you all! Brandy.
Update
July 2005
Michael was born 2 months early due to the fact that I had high blood
pressure. For the first month of his life, we thought we had ourselves a
small, but healthy baby. The doctors told us that Michael had a few problems
with his heart but that they were common in preemies and it should heal on
it's own.. A month went by and they were sending us to a children's hospital
that had pediatric cardiologists on staff.. First the doctor told us our
baby has a heart defect called aortic stenosis and would need open heart
surgery to survive.. What a shock! Then we had geneticists come into the
picture.. telling us that with the heart defect our son has it is usually
something genetic.. They ran tests. Tests that took months to get results
back . It was torture waiting.. The tests came back and it was positive for
trisomy 13. This means that he has an extra 13th chromosome. The
geneticist told me not to bother doing the heart surgery- to just let my
child die- because of the quality of life he would have.. I told him that I
would not play God. God gave me this baby and if He wants to take him that
He would. I refused to just "let my child die" Praise God we found a surgeon
who would perform the surgery, so at 4 months old he had open heart
surgery.. That same day he was breathing on his own (which we were told he
would never do). He is now 3 years old and still beating all the odds. He is
truly our miracle. People and doctors alike are amazed at how well he is
doing.. He has had several minor surgeries along the way and every time it
is scary.. but just like He was there through that first 4 months of
Michael's life, God has been right there by our sides protecting our
precious baby. We thank God every day for Michael- a little boy who the docs
said if he even lived that his quality of life would not be worth
anything... A little boy so full of life always wanting to help others-our
miracle Michael |
Translation
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)