Sadly...Many of the medical and professional community are woefully uninformed about Trisomy 13. Outdated statistics and misinformation cause so much hopelessness... and also cause many to withhold life giving treatment to a child who deserves the same chance any typical kid would receive.
~Penny, Devon's mom

3 weeks old

June 18. 2006
Hi Everybody :o)
We celebrated Devon's 11th birthday yesterday...his birthday was actually Thursday :o) The day started with us getting up early and Charleen picking me up at 8 to drive to Green Cove Springs to pick up my "pick up only" ebay win for devon's birthday...a 4ft from head to toe Bear from Bear in the Big Blue House :o) Bear is SOOOOOOOOOO cute and squishy/huggable...well worth the steal I got him for (9$)...I think it probably cost more in gas to go get him then the purchase price :o) Anyhooooo...we got back to the house around 12:45 - 1PM...party at 1:30. Donna had come over to help Joe with Devon and getting ready for the party at 8 AM :o) Joe went and picked up his cake (Pixar Cars with Mater the Tow Truck as the main charactor on top) chocolate with whipped cream frosting...YUMMY!!! So....we had mom, Mr. Albert, Donna, Charleen, Bella, my brother Brett and his wife Alice and daughter Autumn over for presents, cake and ice cream :o) Devon was SOOOOOOO excited...he was beside himself :o) Couple of smacks and tripping over people a time or two and of course he stayed pretty busy arranging people and then crawling up on them to sit between different pairs of people...but not too bad I don't think...behaviour wise I mean :o)
Devon had a GREAT time!!!! He ate 2 pieces of cake without a breath between...not much icecream though :o) Kitchen was decorated with Cars stuff...it was cute!!! Bear is ADORABLE!!!! and even better...Devon LOVES him!!!!!!! We never know if he'll like something or not....sometimes we're POSITIVE he'll love something we get for him...we get it home and give it to him and he doesn't give it a second look!!! Soooo...it's wonderful to see him playing with his new HUGE pal :o) It's funny watching him try to haul the Bear around...he's WAYYYYYYY big...like 4 ft from toe to top of head!! He got a stuffed Mater (from Cars), a marker drawing set, a red McQueen shirt (from Cars) and a beige Mater shirt (from Cars), he got like 40$ + Donna gave me 20$ for gas for getting him to summer rec :o) He got the Doogle movie...which he's watching right now and I think he likes it???? He also got a new Blue's Clues DVD called Fred's Birthday (Fred is a dress up paper/felt doll on Blue's Clues...he's called Fred Felt Friend ) :o) And Nick made him a CD with some Blackeyed Peas and Sean Paul music on it :o) He ripped open his presents with Joe only starting it so he could tear off the paper himself :o)

And MAN OH MAN....wait til you see the pics I took of him while we were singing to him...I swear that's his favorite part of his birthday! He was slamming his hands on the table drumming in excitement and I think he would have busted if he'd been grinning and laughing anymore than he was!!!!!
All in all, it was a good....exhausting day :o) I even went and got the usb cable out of the box my camera came in so I can hopefully figure out how to download the pictures I took and send them to you all??? Until then....take care and ALL you dads out there...HAPPY FATHERS DAY!!!!!!!!
Love,
Penny.

Devon Victor 11 yrs 2 mo 6th grade

Update: April 2006
I thought I'd tell ya'll that Devon has started horseback riding on Saturdays :o) It's with a group called F.A.I.T.H. Riders (stands for Furthering Abilities In The Handicapable). Today was his 5th time...and it's FREE!!!...otherwise we wouldn't be able to do it :o) He has ridden a chestnut/red mare named Sadie once but they prefer to put him on Navy Boy...a big bay/brown with black mane and tail gelding. The first time, there was whining...but he got upset when he thought he had to get off...we were headed back in the direction of the barn...but he perked right back up when we headed for the trail course instead :o) He gets to ring a bell, pick toys out of a mailbox and put them in a bucket, pick another toy out of a bucket and stick it to a velcro target...we walk over poles, do stake bend...he even gets to trot....his favorite...never fails to elicit giggles and works like a charm in stopping any whining :o)

The last time he rode the Saturday before last...he started fussing the minute I put his car harness on him and fussed all the way there...I should have known he was trying to tell me something. Turns out he was sick...he started diarrhea and vomiting and fever the next day and was sick the whole week...I got it on Wednesday and Nick got it Thursday :o( It was the pits!!!!!

Today he had a ball....MUCH better than any other time :o) The boy is fearless...he throws a leg over and rides backwards, sideways...claps his hands....high fives...doesn't hold on unless I say "HOLD ON!!!! We're gonna trot!"...And then he grabs hold and bounces like a fool...giggling the whole time!!! I'll do my best to figure out how to download pics to my computer so I can email them to everyone :o) I got some cute ones of course :o)

Today he even got to feed one of their pot belly pigs his banana ;o) A definite bonus as far as Devon AND the pig were concerned!!! Next Saturday Nick and Joe have an end of year banquet for the scholarship program...it'll be at Daytona USA at the speedway :o) And that same night we have a FAITH Riders awards banquet :o) OH yeah! And Nick's biology project/experiment got picked for the science fair and it won an honorable mention...he got a 98% on it :o) WOOHOO!!!!

Gotta go get rid of this headache...we're going salt water fishing today!!!!!!!! WOOHOOO I hardly ever get to go fishing...wish me luck!!! Maybe we'll catch dinner???
Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Metroid Prime, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elmo, & food in general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 12/13/02 :o)
See our 3 boys on FL Lab Rescue's website at: http://www.labradorrescue.net/success/index.html (Look for the name Trooper)

Here is Devon's story :o)
My name is Penny and I'm wife to Joe and mom to Nicholas (14 yrs), and Devon (9 yrs 6 months old). Devon has Full Trisomy 13 w/ BALANCED translocation 5 and 13. Basically what that means is that Devon has my balanced translocation plus a full extra copy of the 13th chromosome...making his a full T13. How bout that for an interesting karyotype???? I am a "balanced" (no comments from those who know me please:>) translocation carrier...hence the t13. Nicholas has been tested also and I'm very pleased to report he is not a carrier! Devon was born June 15, 1995. I'd been in labor all night the previous night...the whole time thinking, "Oh cool, I don't have to go to work today!!!". Well...the pains started petering out around 5 am...so I grumbled as I got ready for work.

I called the doctor at around 9 am and told them about my labor all night and they wanted me to come to the office to be checked...my due date was only a week away. It was kind of funny because all morning at work (after I chanced to mention that I'd been in labor all night and that the pains were only coming every 30-45 minutes at this point), my boss and my co-worker (who is a retired EMT) were watching me as if they expected the baby to fall out of me while I was walking or something!!!! Gary...my co-worker (the retired EMT) even went out to the trunk of his car and checked his OB kit that he'd started keeping in there during my 7 th month :o) It turned out I had protein in my urine, my BP was 180/110 (AAAAHHHHHGGGGG!!!), and I had an adema on my calf the size of a football! OOps...didn't even notice that! I was shocked when the doctor said, "Well young lady, this is what we're gonna do...you're going to call your husband, drive across the street get yourself admitted and I'm going to induce you...you're going to have that baby today!!". While I was prepared for going overdue again (10 days with our first son)...I was not prepared to go early or on time! I got really scared because I'd had a really bad feeling throughout my pregnancy even though everything appeared normal...I felt like the only way to keep my baby safe was to keep him inside me. As it turned out it was a good thing I was induced...I believe Devon would have died inutero...not because of anything genetic but because he had the cord wrapped very snugly around his forearm and his neck! When he was born he had it all wrapped around him like he'd been taking macrame' lessons in there and he was also holding the lead wires that were going inside me...he was holding them so tightly in his fist that the doctor had to pry it out of his hand! :o)

He was 19" long and weighed 6 pounds 8 oz. His apgar scores were 9 and 10....and the doctor said he looked great....still...I had a bad feeling all was not well. He had a small hole in his lung and had to be put in an O2 hood because of his accelerated respiration and O2 sats...nothing serious though...they said lots of babies have a hole like that when they're born but it usually closes itself within 24 hours. His genitals did not look quite right either...he was retracted...also very common I was told. Later that night I was in the nursery with him to reassure myself and saw the back of his throat when he was crying. It looked funny to me and I called a nurse over and she in turn called a doctor over. He told me that I'd found a small cleft in the soft palate of his mouth. I was hysterical...now I wish that were all it had been...cleft palate??? what a breeze!! They said they wanted to do a renal ultrasound because a midline defect such as a cleft palate can sometimes point to other things...that was done the next morning.

Our whole world started to fall apart that day when the doctor came in a very upset saying Devon had something very wrong with his kidneys and he would need to go to another hospital where they could look further. I assumed he meant in a day or two...NOT....within 45 minutes I had picked a hospital, a helicopter was there, my husband and Nicholas were there, my family was all there and the flight nurses prepared Devon for his helicopter ride to Shands Teaching Hospital in Gainesville. It was the most helpless feeling in my entire life!!! Nicholas held onto my leg and assured me that he would make sure Devon would be ok...all I could do was stand there numbly and cry and let my mom, dad and Joe hug me. He arrived a few hours before we did and when we got there his nurse told us they'd taken him off the oxygen...the hole had closed by itself! YEAH!!!!! More good news the next day (a Saturday)...the ultrasound lied...his kidneys were fine...he was taking nourishment, maintaining his temp and gaining weight so after 4 days we took him home... he looked great!!!

We went back for the consult 2 days after we got home and then our world really fell apart! The doctor and Lisa (our genetic counselor) told us all about T13...none of it good...we were told that he most likely would not survive his first year, and would be profoundly retarded. He gave us a referral for an MRI for his brain and an echocardiogram for his heart because 80-90% of t13 babies have brain and heart anomalies. They seemed real impressed with his hands (I thought that was kinda weird at the time)...apparently most T13 babies have clenched fists, Devon did not. We were told about scalp ulcers, blindness, deafness, seizures, extra fingers and toes, cleft lip and palate, and a host of other internal problems! In addition, we were told Devon would most likely never sit, roll over, crawl, walk, play with toys or communicate. So as not to disappoint anyone, we heard those two hated phrases...
1) "failure to thrive" and the ever popular
2) "incompatible with life".
Oh how I hate those 2 phrases!!! Ranks right up there with the word "retarded"...hate that one too!!!
Now let me tell you about our reality. When we were told he would not be able to play...we responded by looking for toys to grab his attention...some we hit it lucky with and some we didn't. We offered him toys and teased and played with him until he DID respond! At 3 months he was belly laughing and giggling and smiling the most beautiful smile I had ever seen!!!

Devon does not have heart or brain anomalies, while he is blind in his right eye...he sees quite well out of his left, he was not hearing impaired at birth but in my opinion, because of undetected fluid build up in both ears for his first 9 months (when he had tubes put in and his cleft repaired), he is now moderate/mild on one side and moderate/severe on the other. He wears hearing aids and an FM system in 4th grade.. yep that's right I said 4th GRADE!!! He normally loves school...but this year has been rough...long story short...he was being neglected and injured...I took pictures and kept notes/records and reported it and the teacher resigned...a new teacher is supposed to start here anytime....so hopefully he'll again enjoy school? Rides the bus...and adores his aid and the driver :o) He can go up and down the steps by himself with someone spotting....although he very much enjoys making me work to get him to go up the steps in the mornings :O( He's not using his chair at school or on the bus at all now! By the way...we're selling it so that we can buy Devon some recreational equipment :o) It's a Zippy/Quickie tilt in space wheelchair (in excellent condition), and it's midnight metallic purple (very dark with metal flake that catches the sun) and has lavender/grayish upholstery :o) Just email me if anyone's interested :o)

We still use his stroller when we go out most of the time...for our own piece of mind and for our sanity :o) He had one foot turned at birth (club foot???...no one ever used that term, but I think that's what it was?? ...who knows...rocker bottom???)...it pretty much fixed itself early on, probably because of all the early intervention! He has no arch and has UCBL's (splints) for both feet...although at present he doesn't need them. He has 11 sets of ribs instead of 12 (just a weird little quirky thing...not a problem). He has incomplete transpalmer creases....couldn't prove it by me, also very common in the general population. Lisa, our genetics counselor has incomplete transpalmer creases:o) They say his ears are low set...again...couldn't prove it by me :o) I mentioned that to Dr Carey in Rochester and he measured and said that no his ears are not lowset...but with his high forehead it gives that illusion :o) He also has capillary hemangiomas (sp?) basically these are "butterfly kisses" or "angel wings" ...or birth marks on his head and forehead. The one set of "wings" on his forehead have lightened up with time but still get bright purple when he's hot or mad or crying. Kind of like a built in mood ring :o) He was low tone well...actually mixed high and low for a long time...now however his therapist says he's NORMAL TONE!!!! YEEEEHAAAAAAAHHHHHHHH!!!! He does however, have low joint tone...makes them sort of "click" real easily. He's been sitting since he was 28 months...unassisted, cruising furniture and wall walking and crawling since 29 months...and is currently walking totally unassisted!! He used to use a wheelchair (midnight metallic purple with lavender/gray upholstery)...we only use a stroller now when we go to stores or Sea World or something :o) It's a very snazzy Convaid Cruiser...Blue Plaid and folds up like a big umbrella stroller :o) Noone told our little stinky boy about the failure to thrive thing...he weighs 68 pounds and is 50" tall now!!!!

He has Dysphagia (a swallow disorder that causes him to have an uncoordinated swallow, and aspirates regularly). Intensive speech therapy has helped a lot and he can now eat PBJ's, breaded fish filets, pizza, brownies, cookies and alot of normal foods like pancakes and cereal and toast and potpies...still have to be careful with meats and harder veggies though. Whatever he aspirates he purges on his own...he's never had pneumonia of any kind! He does however have Asthma....it causes a lot of pneumonia-like symptoms at times but is currently under control with one maintenance spacer treatment a day (Flovent). He hasn't had a flare-up in a LOOONNNNNGGGG time!!!

Devon's eyes seem to be his "genetic grab bag". He has Microcornea, Microopthalmia, bilateral colobomas, retinal dysplasia (incomplete retina-rt eye)...basically what that means is shallow orbits and small eyeballs (right is smaller than the left). The colobomas, because of where they are, make it so he has no lower field of vision. He is also being followed because of cataracts in both eyes...he's had them for about 5 1/2 years now and so far are not a problem. Glaucoma is also a possibility for the future...but we'll take it a day at a time! :o) He's been wearing some very smart looking glasses since November 1999 now and doing super with them!! A PS...since late 2003...Devon no longer needs glasses...his vision has improved...his astigmatism and farsightedness have both improved.

Devon was rolling around all the way from 6 months until he started crawling...fast little sucker too! He's currently at about the 24 - 36 month level physical/motor skills-wise and 24-36 month socially/cognitively . He can sign "more", "eat", "hi" and, "drink"...he says "mama" and "baba" and understands several words, phrases, and signs. He is also now learning to use a touch screen at home and an Intellikeys at school...and also PECS (Picture Exchange Communication System)...he gives me a picture of cookies when he wants them and a picture of a drink when he's thirsty :o)

He sleeps in a a Vail 1000 bed now (we just bought a used one...well the Knights of Columbus did :o)... Presently, (since he's been on Trazodone and even moreso since we got the bed just before Christmas 2004) he's doing MUCH better with his sleep patterns. The kitchen is also gated and the bathroom doors are shut all the time...have to keep an eye on him 24/7 as he now turns lights on and off...on and off...on and off (get the picture?)...and he can now open doors :o( Devon is also potty training and doing very well (it's been a work in progress for a looonnnnnngggg time)...I'm noticing him staying dry for much longer periods of time and we now have a voice switch on his potty chair so that he can call me when he goes to sit on the potty:o) He hits the switch when he goes to sit down on it and I hear "I need the Potty" and then I can run to him and pull his britches down....forgot to mention...when he goes to sit on the potty to go, he doesn't yet know how to pull his own pants down :o) Oh well...details details...no one's perfect :o)

His main mode of communication is PECS (Picture Exchange Communication System). For instance...if he wants cookies he gives me a picture of cookies...picture of cup of juice for juice... picture of a bottle of milk for a bottle of milk... etc He also has a very direct approach to things...he selects the video he wants to watch and brings it to us...or if his "eat" PEC isn't available he brings me a spoon :o) So you see there's ALOT going on up there in that noodle of his !!!!!! ALL of those things we were told he would never do...we encouraged him to do anyway..if he had not been able to do them after trying and trying then we would have been ok with that...but Devon is a very determined little man and does not accept defeat easily. To date...I have not known him to give up on anything yet. Things may take him longer to
learn...but he DOES learn!

We know that Devon could and in all probability will die while he's young (although we pray daily that we will be graced with his physical presence for alot of years to come)....for no good reason even, by that I mean that even though he has no real life threatening concerns (with the possible exception of asthma, dysphagia (swallow disorder that causes silent aspiration, and increased sensitivity to insect bites/stings). But we enjoy "pert near" every minute we have with him....leaving out those times I want to choke him...like when he gets up to party 2-3 times per night...or when I 'm scared to death when he's sick. I love him more than I ever thought possible and will let go someday when I'm forced to...I hope I can at least... not sure if I'll be able to or not! Too painful to think about. although I still do. We are so grateful for the time we have with him and I wouldn't trade him for the world!! I'd be happy to answer whatever I can for any who might have ????'s
Penny My email address is pvictor@cfl.rr.com

Click here for Oct 2005 article about
 Devon & his family.