Good News, Accomplishments
of our Precious Trisomy 13 Children
It seems we only hear of the problems that come with a child having Trisomy 13.
There is so much more to these sweet lives. Each day the living children bring
joy to their families as they accomplish simple tasks or reach a milestone.
These moments are always a cause for Celebration! We'd love to share the
"reality" of Living with a child diagnosed Trisomy 13.
here to send us your good news! 4-29-10 Victoria
is 31 months and in April began kindergarten, concurs with children "normal"
and has besides the classroom teacher of a special educational assistance to
accomplish their tasks. Still will not talk much, just say: Mom, Dad, Papa (that
means you want to eat) and apa (When you want the sit on my lap) but the most
wonderful thing is that for example when you want to watch Disney Channel she
takes the remote control and is playing the keys until she manages to get the
channel she wanted. When she wants water, or take the bottle she goes to the
fridge, opens it and takes what she wants. Also known to place the arms into the
sleeves when I change clothes and puts her feet forward when putting on socks
and shoes. She learned to stand alone on the swings and throws one of the slide
in the square. My heart explodes with happiness with so many wonderful things
progress and what she’s learned. Ojala many physicians would understand that
what the books say it is not always 100% true ... there are miracles of love ...
and Vico is one of them ....
1-5-10 Samuel is doing well. He has learned so much this year.
One day last week he really wanted to go somewhere--anywhere. He took me to his
sock drawer, opened it and got out a pair of socks and handed them to me. He
walked over to his bed, sat down and raised his foot up. I put on his socks,
then he took me to his shoes and when I picked them up, he went back and sat on
his bed again. I put his shoes on and he took me by the hand and led me to the
bathroom where he proceeded to open the drawer and get out the toothpaste and
plopped it down on the vanity. I brushed his teeth and he led me straight to the
After that display of smartness I HAD to take him somewhere! He never stops
amazing me...just when I think he may have reached his "limit" he does something
else to let me know I should never stop hoping, never stop believing. He brings
so much joy to our family!
has been doing so well. She experienced a day of adaptive skiing in December.
(See the video on her album page)
She is walking everywhere, we still stay very close by and have to watch her
closely as she tends to take off on her own. She seems very ready to learn more
sign language and verbal skills this year so we’ll see what 2010 brings.
Good News, Samuel
is going to be baptized on Sunday, January 18, 2009 which is National Sanctity
of Human Life Sunday.
Sanctity of Human
Life Week -- January 18-25, 2009.
I know that this space is for those living with a child with Trisomy but I had
to tell you all that after Samantha passed,
we got pregnant again and gave birth to a healthy baby boy. We named Connor
Joseph Wellman. I still think of my little girl every day. Only now I believe
that she sent this baby to us giving us another chance at being parents. Connor
is now almost a month old and doing great. No signs of trisomy or any other
problems and I am grateful to be getting this new chance at being a mommy again.
It has also made me step back every so often and just think about how precious
life really is and fast it can be taken away and for that I focus alot more on
the little things that maybe I didn't think twice about before. This web site is
wonderful and has helped me through the roughest time in my life and for that
I'm thankful for all of you too. For those of you that don't know me my story is
posted under Samantha Renae Wellman.
I want to share our joyful news with you all -- Maxie
started to walk yesterday! I knew something was up when he let me support him by
holding his jammies from the back (instead of holding my hands) while he walked
in circles around our little house in the morning. Then, at his PT appointment,
after walking a little bit on the treadmill as usual, we took a stroll down the
long corridor. The therapist stood behind him with fingertips on his shoulders
and my husband walked in front of him encouraging him. He took 2 or 3 steps by
himself, before losing his balance then would get up and start again. After 20
minutes we rested and bounced on the exercise ball, then we tried again. By the
end of the hour (an hour!!!) he was cruising in 10 foot stretches and laughing,
“eh-eh-eh!!!” as he nearly ran to Dad.
We were so thrilled, especially since we were all there together that day
(holiday) to witness it and celebrate!
He does walk with his hands above his head and he doesn’t catch himself when he
falls, but his balance was improving before our eyes.
I have attached a little video below of the beginning of this process, if you’d like
to take a look. Hooray for Maxie!
Julie, mom to nearly 19 month Max, partial T13
(+13/-2 and Klinefelter’s)
September 29, 2008
Today we celebrate Hannah's 8th
She never ceases to amaze us that she is doing so well! She is one of the
children I know. She is always worried about other's feelings and will do
everything in her power to make sure that everything is fair to everyone. She
won't even take a doll on a trip with her because she doesn't want to hurt the
other doll's feelings!
She is now in 2nd grade, takes ballet and jazz and had lots and lots of friends.
She has a HUGE imagination and loves to be the "host" of anything. She loves to
play Wii, loves Hannah Montana, Disney Channel and pretty much anything Disney
related. I think she should be a tour guide at Walt Disney World someday. She
would be perfect at it!
She is my little worrier and tells me that she doesn't want to get any
older...she is quite an old soul. She loves to boss her three brothers around
but when it comes down to it, she is very protective
of them. She is the most content when all of the family are together. She is my
Happy birthday Hannah Clare!
On September 13th we will be having a celebration of life party for our son
Daniel Miguel Gonzalez. He was diagnosed with full T13 when I was 21 weeks
pregnant. We were prepared by our doctors. we had his casket picked out, our
family ready to be there at the hospital with us for what little time we might
have with him. They told us that his condition was severe. Tetrallogy of Fallot,
bilateral cleft, and more yet to be discovered. they told us about how "children
with trisomy 13, they just aren't any kind of normal, that there is nothing
anyone can do for them" we were told our son would be lucky to make it full
term, to breath, that I'd never feed him, that he would be virtually a
vegetable. I was hugged by EVERYONE. I had so much support from every woman who
knew our story. so many tears shed.
On July 11th, 2008. at 8:18am, Daniel was lifted from my womb and made the most
beautiful cry I had ever heard. Full term, Cesarean, 8lbs 7.1oz, 19 inches long,
breathing, reaching for his daddy's finger. he scored an 8 on his APGAR. 45
minutes later he was nursing a bottle. there were so many moments of complete
bewilderment for his pediatrician. like the one when he told me my son could go
home with me, that he was wrong, that maybe he might actually live a month, not
the 48 hrs he had told me the day before birth. My high risk ob couldn't stay
away from my recovery room. He kept bouncing in and out with the biggest grin on
his face. We were the success story for him. The wonderful miracle. This doctor
who lifted my son into our world had been there through everything with us. He
knew our fears, hopes, and he understood the full breath of love we felt for our
little baby boy. Our little baby Daniel. We gave birth to him in Billings, MT
and were provided with the sweetest most comforting hospice support when we took
him home to Bozeman, MT. The nurses were great, but we wanted more for our son.
I demanded an echo and got a confirmation of diagnosis, and 1 1/2 hr of
lecturing by the cardiologist on how our son was not worth surgery because of
the statistics on t13 babies, mortality rates, severe brain deformities, etc. He
told us he might not be able to handle anesthesia because of his brain, so I
asked for an MRI to see if he had the possible brain malformations that made it
so dangerous. We were told that they'd have to sedate him for that and he might
not live so they wouldn't do it. There was a huge paradox in my mind. IF THEY
WERE REFUSING TO SAVE HIS LIFE BECAUSE HE MIGHT HAVE A BRAIN PROBLEM, AND THEY
WOULDN'T LOOK TO SEE IF HE ACTUALLY HAD IT, THEIR PRESUMPTIONS WERE SEALING OUR
I exhausted our medical resources there, and then my mom found this website. She
told me about Josiah, a 10yr old boy with the same ailments my son has and how
he has doctors who treat him. There was no question after that except HOW DO I
GET THERE TO CALIFORNIA?? I got some help from a very generous organization and
before we knew it we were driving across Nevada. Today my son is beautiful,
healthy considering his disorder, eating, sleeping, pooping, peeing, smiling,
interactive, reaches for us to pick him up, has ticklish spots, has doctors that
have almost immediately set him up with specialists and tests. He is a wonderful
boy and we are celebrating how lucky we are to have him. I have a few goals that
if God allows will set the standard for our lovely educated doctors: my son will
speak, he will eat with his mouth on his own, he will walk, he will live to help
us tell his story to anyone willing to listen, he will visit Disneyland, he will
go to school even if I have to bring the teaching to him, and he will never be
treated like a statistic again.
6-3-08 Lynne is 49 years old. She is the oldest living person
with partial trisomy 13. She is a long term survivor.
celebrated her 26th birthday on March 6.
Just wanted to thank everyone for praying for Samuel. He still is not 100% but
feels much much better. He was able to go to school a couple of days last week.
Of course he has an excellent school nurse (me) who's office is just 2 doors
down from his classroom, so I wasn't too worried about him returning to school!!
I also wanted to share an accomplishment. Samuel gets his total nutrition from Pediasure, which he drinks from a sippy cup. He does this independently--he will
turn the cup right side up if we give it to him upside down and he will turn it
around until the spout is on the correct side. Recently he has been unscrewing
the top and taking it off and getting the last drop out of the cup, but that is
messy sometimes, so we screw the top on very very tightly now.
Anyway....when he gets through with his cup, he just throws it to the floor. We
have been working and working with him to give the cup to one of us when he is
finished. I am excited to report that he is consistently doing that now...he
will stretch his arm out with the cup in it and hand it to us. If he leaves his
cup in his room, we send Roeber (his skilled companion dog) to get it and Roeber
will bring it to me or Tim, but the other day, Samuel was between Tim and Roeber
and took it from his dog and then turned and handed his cup to his daddy!! I
about cried...ok I did cry and I think daddy did too. That was HUGE!! Also last
week my mom picked him up from school one day and brought him home because I had
a meeting. She gave him a cup while riding in the car. When she got to my house,
she looked for his cup in the floor of the car..she said she was crawling around
looking under all the seats and could not find it anywhere, then she saw
it...Sam had put it in the cup holder!! thanks again for all the prayers
Hi Everybody, Kimmie participated in The Special
Olympics here in Naples FL. Kimmie was entered in 2 events, the 1st was the
tennis ball throw where she placed 2nd and she also did the 25 meter walk where
she placed FIRST!!! We are so very proud of our girl. Cindy & Tommy Miller very
proud parents of Kimmie T-13 20 years old.
1-25-08 Michael’s heart surgery went very well. He did not
spend very long in the hospital! He is doing wonderful and the doctor said that
his heart is working the way it should be! Praise God! Brandy
10-2-07 Melanie is now able to pull herself up and stand. That
is a huge accomplishment!! Raul Gutierrez
turned 16 today!!! and has had a really good day, she is not having many
seizures lately and not having any other medical problems.
We are having her little party Sunday but she enjoyed a Birthday cupcake and ice
cream and she loved it!!
Rebecca can now change out her VCR tapes, really she just started doing this
Also she is doing better at school, I think that she has decided that she likes
her teacher and is becoming very attached to her. So I am so thankful for that.
Also she has mastered a counting cookie jar that you have to put a little
plastic cookie in the jar and it will talk to you. I guess this goes together
with her finally putting her tapes in the VCR.
I am so glad that she is able to have some independence and some confidence.
21st birthday is approaching!
The big day is August 3rd. Rebecca is excited, and so are we. We already took
her to see the movie Ratatouille and out to eat, because she and I are traveling
out-of-town in a couple of days to another family wedding (the third scheduled
for this summer). We thank God for Rebecca and the blessing that she is to our
family and friends!
Glenda Parkman, Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q
translocation, almost 21-years-old) and Aaron (18-years-old and preparing to
TECH), and "Grandma" to Toby (our pup)
We are excited to celebrate Rebecca's 21st birthday. - August 3rd! We thank God
for Rebecca and for the blessing that she is to our
family and to others! Rebecca's 22nd birthday was August 3rd. I ordered a big
"cookie cake" from The Great American Cookie Company for her to take to the
regular Thursday afternoon meeting of her social and life skills group. I'm also
took sodas, and the group sponsors had already planned to let the kids make
hotdogs, so that worked out great! Rebecca loves pink and had picked out pink
plates and cups and pink and yellow napkins. There are about 20 young people in
the group, and Rebecca was so excited about taking the cookie to share. Mike and
I and Aaron went out to eat with Rebecca for her birthday on Sunday (the real
date of her birthday).
Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation,
20-years-old) and Aaron (18-years-old) and "Grandma" to Toby (our pup)
We have worked so hard on any type of communication with
Mitchell; PECS, Sign, and verbal. He catches onto signs but it takes awhile
for him to catch on. Lately he has been signing a lot better and overall
communicating like a superstar! Last night my husband, myself and Mitchell were
just sitting around. I told Mitchell that it was time for bed pretty soon and of
course he shook his head "no". Then out of the blue without prompting he looked
at me and signed "book"-this is a sign that he uses very well but it is what
came after it that dropped our jaws. I said-"yes we'll go read some books and
then we'll go to bed". Mitchell then signed, "book-dad" Paul and I usually take
turns reading books to Mitchell before bed and evidently he wanted Dad last
night. We were so proud of him...even though I felt a little left out, I know
dad felt very proud!
Katie - Mom to Mitchell t13 mosaic
Hi again everyone. I have forgotten to tell you about a milestone moment for
Rebecca I have been working on different signs with her and about 4 days ago she
actually started signing book. She loves for me to read certain books to her,
she changes favorite books about every 2-3 weeks or so and she will bring me
this book to read over and over sometimes I read the same book 15 times is a
row. anyway i always ask her "Do you want mama to read more book" and I sign
mama, read, more, and book. and I take her hands and do the signs too. which she
loves and laughs every time I do it. Anyway she finally started doing book and
at the right time too.!!!!!!!!!!!
So I think that this milestone might just put her up into the class that is a
little more advanced and if it does then she can go to the school that is 1 mile
away from home!!!!!!! Much better than almost 20 minutes away!!! Anyway that is
my little milestone story now if only we can get potty training!!! Ha! Cindy mom
to Kayla and Rebecca both partial t13
I just wanted to send a note regarding what the rest of this day holds.
Rebecca's special needs school has
had a middle/high school class for the past few years, and Rebecca is to be the
first graduate from their high school program into their adult training program.
(The first members of the adult program came in from other schools/programs.)
The school is having a graduation ceremony for Rebecca tonight, complete with
cap, gown, and stole. The cap and gown are red, and the stole is black. They
also had a Baccalaureate service yesterday, and she walked down the aisle to the
song, "I Believe the Children Are the Future." This represents, not the
culmination of working with her (because we'll continue, by God's grace helping
her to "be all that she can be") but an opportunity to reflect upon, and to
celebrate, how very far Rebecca has come in her almost 21 years of life. I'm so
thankful to God for all that He has done in and through Rebecca's life! I am
also extremely proud of and for her!
Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation,
20-years-old) and Aaron (18-years-old and graduating from high school with
honors on May 25th, Lord willing) and "Grandma" to Toby (our pup)
Hi Everyone :o) Devon has a new skill :o) We’ve been doing the hand
over hand routine for Devon’s bathroom routine for a long time. Although he
cannot unbutton his pants and pull his zipper down, he CAN pull his pants down
and sit down and scootchie back on the seat AND get back up by himself. He
attempts to pull them back up…but it’s a lot harder for him. Along with his new
teacher and myself…we also do hand over hand and make him flush the toilet and
wash his hands. Yesterday he got up and reached for the flush handle by himself
and he looked at me to see if I was watching and I told him to go ahead and
flush it. HE DID IT!!! Of course he was so excited and proud of himself that he
went back in the bathroom a couple minutes later and flushed it again…huge grin
on his face :o) And well…a couple minutes after that (after I’d gone back to
doing something in the kitchen)…he went back in and flushed it again and stood
there clapping his hands and grinning :o) At this point I had to tell him to
stop…that he only gets to flush the toilet when he does something in it :o) But
hey…we’ll take it :o)
Well my Macy Mae is doing really good since her visit to hospital with
pneumonia. She so funny with her cheekiness. Well just 17 days to her first
birthday and I couldn't be more proud of her. Katrina Mum to
Macy Baker Full t13
I should take this opportunity to mention that since Devon
has switched classrooms and teacher/paras… he’s doing better and his behavior at
school is better. He is listening to his teacher much better Mr. Johnson just
has to use a firm voice when telling him to do something. And our “behavior
improvement plan” is helping too bother here and at school ~Penny
Zion pretty much over his sickness. Thanks to all of
you great friends out there who sent up a prayer on his/our behalf. He is back
to tolerating regular feedings, his fever is gone and we are trying to get him
off the oxygen, but that is taking a while. He still cannot breathe well without
it, but he will get there. It will just take time. ~Kristie
Today while waiting in the Doctors office, Natalia
kept walking with her walker to the water fountain. She maneuvered the turns
beautifully. She's getting very good at walking, turning and backing up her
reverse K walker. Although G-tube fed, she really enjoys the water fountain,
sticking her tongue out to feel the cool water on her tongue and to slurp a sip
of water. She smiles, leans forward to try again and again and again! And even
does a little jumping dance when she knows she's found the water fountain yet
again. I think we made about 5 trips to watering hole this visit.
Another fun thing she is doing. Many of you may have tried this with your
typical kids...You turn their palm face up so the under part of the forearm is
showing. and then you ever so slowly run your fingers up the arm from the wrist
to the elbow. Most people get a quick tickle.... well Natalia just loves this.
She knows when we place her palm up -- she knows what's coming....Once we touch
her arm...she gives the most heartwarming giggle, and today I noticed, after
I've done it a few times... I can just hold my hand there just about ready to
begin... and she anticipates what going to happen and begins giggling....it very
Oh, and sharing her giggles. She's been having her own "giggle parties." On any
given evening we'll be watching TV, Tonight is was American Idol...(What a great
show!!! Raising funds for the needy) Anyhow, she gets herself giggling and she
can have her own "giggle fest" for several minutes... Its quite a show as she
rolls side to side please with herself for something...Its very funny!
Eventually she's scooped up by a sibling saying "OH she's so cute" Oh how I wish
I could capture all these great moments...She is so delightful. These times I
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.