Andy was born on October 7, 1997, around 19 minutes past 4 o'clock
in the afternoon in Enschede, the Netherlands,
as the son of Frans and
He has the Dutch nationality.
His mother had very painful contractions, much more painful than
with the birth of Annabel,
but once she could start pushing, everything went rather smooth.
He was 52 cm long and weighted about 3150 grams.
Andy was examined rather careful, because during the
first ultrasound, an abnormal thick
was found, raising the suspicion that he might have Down's syndrome.
second ultrasound, about six weeks later, none of the typical
abnormalities for Down's syndrome were found. The examination at birth
confirmed that he did not have Down's syndrome, but some strange features
were noticed, namely:
At least, non of these features were considered to be a reason
for alarm. The features 1, 4, and 5 have been seen with other
members of Li-Xia's family. There was no reason for him to stay
in the hospital, so he went home with the two of us.
- Thick neck.
- Slightly low muscle tone.
- Short fifth finger on both hands, with the top part
- Rather large ears, where his right ear is slightly
malformed, almost looking like turned inside-out.
- Second toe on both foot placed slightly higher.
- Triangular shaped nostrils.
Arriving at home, we found out that the neighbours had decorated
our house according to the local customs to welcome the new baby.
Genadig en barmhartig is de HERE, lankmoedig en
groot van goedertierenheid. Psalm 145:8|
Blij verwonderd zijn wij dat God, de schepper van het leven,
Zijn roepnaam is: Andy
Hij is geboren op 7 oktober 1997.
Hij weegt 3215 gram en is 52 cm lang.
Frans en Li-Xia
Translated into English, it says:
From his fullness we all have received,
grace upon grace. John 1:16.
We are happily surprised that God, the creator of life,
entrusted us with: Johannes Abraham.
His calling name will be: Andy.
He was born on October 7, 1997.
He weigh 3215 gram, and is 52 cm tall.
About his name
You might have noticed that his calling name ("Andy") does
not resemble his first official name ("Johannes"). In Dutch
"John" is translated as "Johannes", which is closer to the
original Greek name, from which it is translated, than "John".
We first picked his calling name. First of all, because it has
a nice meaning in Chinese. For "An" we picked the Chinese character
for grace, which also happens to be the first character used
for how the Chinese write "Enschede". For "dy" we picked the
Chinese character used for "leader", which happens to be the
first character used in the name "Dihua" the old name for
Urumqi, the place where
Li-Xia was born. Although in the
English speaking world, "Andy" is short for "Andrew", we finally
picked "Johannes" because it is a name that has a long history
in our family, and because its meaning
matches that of "Andy". Much later, on September 31, 2000,
I read in a Dutch dictionary of calling names
(Spectrum Voornamenboek, J. van der Schaar,
ISBN 90-274-4109-X) that "Andy" is
short for "Johannes". Quite interesting, but I think it
talks about "Andy" produced in Dutch way, in which the "An"
sound much like the "an" in "Johannes". We pronounce "Andy"
in the English way, because then it sounds the same as in
Chinese, and also because the Dutch pronunciation is being
used as a brand name of a detergent here in the Netherlands.
An abnormal high value for
TSH (thyroid-stimulating hormone) was found during the
standard blood screening test which is performed on all babies
in the Netherlands. When the test was repeated, a slightly higher
value was found. We were send to the pediatrician for further
examination. He performed a number of blood tests, which revealed
that there was nothing wrong with the T4 growth hormone level.
In the following weeks we regularity visited our pediatrician,
and additional blood tests were performed. Nothing abnormal could
be found, and the TSH for level slowly became normal again.
Mid November our pediatrician noticed that Andy's weight was
falling behind. We also started having problems with feeding. It
looked as if Andy lacked the strength to drink. Also he started
to have absences, usually when he got angry for some reason.
At the end of November Andy was accepted in the hospital, and
all kinds of test were performed, but nothing abnormal was found.
The chromosomes of the lymphocytes from his blood were analysed.
No structural abnormalities were found. His karyotype is 46,XY,
which is that of a normal male.
After one week he was released from the hospital, because his
weight improved, but not for long. One week later he was hospitalized
again, and the feeding problems became worse. On December 26, 1997,
a feeding tube (through his nose) was inserted, because his intake
was too low. He drank less and less by himself until he refused
to drink completely. At the end of January, after we had learned
to feed Andy by tube, he was released again.
For a long time, it was thought that Andy did have some kind
of metabolism problem. Because of this reason we were sent
to some specialists, but they also could not find anything.
From there on we were introduced to a clinical geneticus,
who, noticing bald spots above Andy's temples, suspected
tetrasomy of 12p.
March 9, 1998
Using the Internet, I found out that tetrasomy 12p
is also known as the Pallister-Killian Syndrome.
(Pallister-Killian syndrome is a dysmorphic condition
characterized by a tissue-limited mosaicism; most
fibroblasts have 47 chromosomes with an extra small
metacentric chromosome, whereas the karyotype of
lymphocytes is normal.)
Below some resources about this syndrome.
After reading the above resources, we felt that Andy did not have
this syndrome, which was later on affirmed by the chromosome analysis of
the fibroblasts from Andy's skin cells. Again no abnormalities were found,
thusruling out the PK syndrome.
May 4, 1998
I found the home page of V.O.K.C.V.S., the Dutch organisation for parents with children
that chronical food refusal and tube feeding.
In August 1998, we visited a specialist for feeding problems.
After seeing Andy's hands, he remarked that Andy might have
the Kabuki Syndrome. Searching the Internet, I found the
Later that month some slides were made from Andy to be reviewed
by the clinical geneticus.
October 31, 1998
We attended the second contact day of the
Dutch Kabuki Network.
There we met several parents, who after seeing Andy said that it
was like seeing their own child when at his age. We decided to
take the point of view that Andy does have the Kabuki Syndrome,
until it is clearly that he does not.
Does he have the Kabuki Syndrome?
The experts are contradicting themselves.
On November 25, 1998, I was phoned
by a clinical geneticus who affirmed our conclusion that Andy
does have the Kabuki Syndrome. However, two days later, we visited another clinical geneticus, who said
that he was not convinced. He said that if an analysis would be
made, he would be very likely score very high with respect to
the Kabuki Syndrome, but he also said that because of the broad
range of characteristics, the Kabuki Syndrome does rather easily
show up. He asked us to contact him again a year from now.
November 28, 1998
Picture of Andy and Annabel.
For almost half a year Andy's weight has been going up and down around
7250 grams. I created a the page Feeding Requirements for Boys in order to calculate his (mal)nutrition
state. Finally, Andy started to gain some weight again.
I talked to him over the phone.
While driving to my office, I was forced to insert the feeding
tube along the side of the highway, all by myself.
Li-Xia does do it every day.
Andy's weight has normalized around the 10 percentile line according to the
feeding requirements for boys.
Yes, we know it for sure now, at least as sure as can be
possible. Andy does have the Kabuki syndrome.
Andy recognized my voice over the telephone.
We attended the third Kabuki day organized by the Dutch Kabuki Network.
Li-Xia is getting good at feeding Andy food with a tube in his mouth
Today, for the first time Andy sat up all by himself. We feel about this
as other parent do when their child walks free for the first time.
We are going to have cake when Andy will walk free the first time!
December 5, 1999
Picture of Andy and
January 6, 2000
Today we received the CD-ROM from Catalpa with their presentation. The day-care center that
Andy attends belongs to Catalpa. We received a copy of this
presentation because it contains pictures of Andy under the
special project participation handicapped children.
It's quite funny, but it is only until recently that Andy started
belching. As a baby he never did this, as babies usually do. And
then all the time he was tube fed, he also did not belch. But since
we feed him through his mouth, he started to belch. And how!
Stories about Andy
Below some more stories about Andy, as they are recorded in the
online diary of his father:
- February 25: Out of petrol.
On this day, I ran out of petrol because I forgot to get
some when on last Saturday we had to rush to a P.G. because
of Andy being ill.
- March 15: "Going to the sea?"
- March 29: Andy crying
- April 1: Buying a swing bench
- May 11: Four spoons
- May 13: Feeding him during the disaster
- May 28: Calls us "Mamma"
- June 4: Waking up in the middle of the night
- June 28: Picture of
Andy and Annabel
- July 8:
Andy loves House and
- July 29: "Lego Technic box 8280: a fire-engine"
- Septermber 23: fourth Dutch Kabuki day
- October 5: A lot fun about other children play
- October 7: Meeting Dick Bruna on his third birtday
- October 13: Nutrison Paediatric Multi-fiber
- Octoner 16: Getting his flue vaccination
- October 28:
Andy still isn't able to crawl properly. His first method
of moving around was laying on his back, and pushing
around with his legs. Then he started to use a kind
of tiger crawl, where he uses mostly his left feet
for pushing. Now he also starts moving around while
sitting on his butt. He can both move forward and
backwards now while sitting on his butt.
- November 26: Calls "Opa" for the first time
- December 2: Says goodbey to his "Opa" for the last time
- December 8: Walks along a table
This evening, Andy walked for the first time all by himself
along a table. He got up by himself, walked along the table
about one meter (three feet), and dropped on his bottom.
Luckily, he is still wearing diapers.
- December 11: Can bike very nicely
This morning Li-Xia saw how Andy can bike very nicely now in the
rehabiltation center. We don't think he can bike outside yet.
- December 15: Andy being ill, refuses to eat
The past three days Andy had a fever, and almost refused to
eat. We had to feed him by force.
- January 11: Andy discovers himself
He starts to talks to the reflection of himself, and points
at himself. Lately, Andy starts to walk around the table
all by himself. He cannot walk freely yet. He also can stand
against the couch for a considerable amounth of time now.
- January 15: He goes to the
for the first time. This is a daycare center for children with
- February 25: Noddy
- Friday, March 9: Making progress
- Saturday, April 7: Can name his video tapes
- Wednesday, April 25: Arranging spoons
- Monday, April 30: Looking for his grandpa
- Monday, May 14: Mollusca contagiosa
- Saturday, May 12: Having a girl friend to play with
- Saturday, May 19: The 'Winckelsteegh'
- Thursday, May 17: Knows where his shoe is
- Tuesday, May 29: Can say his name
- Thursday, May 31: Calls his mother
- July 28: Picture.
- Monday, June 4: He can bike
- Friday, June 15: Sending a video tape to "De Winckelsteegh"
- Wednesday, June 20: Getting new ear tubes
- Sunday, July 1: Glenn Doman
There was a program about Glenn Doman which made us think
about Andy's current development state.
- Wednesday, July 4, 2001: More on Glenn Doman
- Saturday, July 28: "De Waarbeek".
Again the little train was his favourite ride.
- Sunday, August 5: Feeding him in the car
- Saturday, August 11:
Swimming in "Het Heiderbos"
- Sunday, August 12: Remembers cottage 636
- Monday, August 13: Feeding the ducks with his grandmother
- Wednesday, August 15: He stands upside down in his bed
- Monday, September 3: Going to "De Winckelsteegh"
We, Li-Xia and I, went to Nijmegen to talk about Andy's
eating problems with the people from "De Winckelsteegh".
- Thursday, September 27: Getting a new driving license
- Saturday, September 29: Fifth Dutch Kabuki day
- Sunday, October 7: "blowing out" the candles of his birthday cake
- Tuesday, October 9: Omega-3 fatty acids
- Wednesday, October 24: Crawling up the stairs
- Thursday, November 15: Mental age of 22 months but improving
- Friday, November 16: Myelination
- Monday, November 19: Makes his first steps on his own
- Monday, December 3: Idiopathic Thrombocytopenic Purpura?
- Tuesday, December 3: Immune Thrombocytopenic Purpura!
- Thursday, December 6: Going home
- Sunday, December 9: Andy starts walking
- Monday, December 24: Evening service
- Wednesday, January 23: Drinking and eating
- Saturday, February 2: Taking pictures
- Tuesday, March 5: Making his first joke
- Thursday, April 5: Idiots fair
- Wednesday, April 10: Going home
- Thursday, April 25: Video tapes
- Sunday, June 2: Going swimming
- Sunday, June 9: Winnie the Pooh
- Friday, June 14: "Vrijdag"
- Saturday, July 6: Going to "De Waarbeek"
- Sunday, July 7: Watching pictures
- Thursday, July 18: Giving a performance for him
- Thursday, July 25: Standing up
- Monday, June 10: Winnie the Pooh (Cont'd)
- Tuesay, August 27: A painting
- Saturday, August 31: Finding a lost friend
- Friday, December 13: Andy having a good memory
- Tuesday, December 24: Toys
- Thursday, January 2: Taking the train.
- Sunday, January 26: A new bed for Andy
- Monday, February 3: Status report of Andy
- Sunday, March 9: Exhibition of Billy Foley
- Saturday, March 15: Second swimming diploma of Annabel
- Friday, March 28: Eye Q
- Tuesday, April 22: "Now?"
- Monday, May 5: Swing bench
- Monday, May 19: His progress
- Thursday, May 29: Birthday party
- Sunday, July 6: Exhibition
- Thursday, July 10: Not growing enough
- Saturday, July 12: Last Saturday at "Klim Op"
- Sunday, July 13: Making his first drawing
- Tuesday, July 15: Saying goodbey
- Monday, July 21: Holidays really have begun
- Saturday, July 26: Visiting friends
- Monday, July 28: De Waarbeek
- Saturday, August 2: Going into Xenos show
- Monday, August 4: LAGA
- Monday, August 11: First school day
- Friday, September 5: Dancing at the wedding
- Saturday, September 20: Sixth Dutch Kabuki day
- Saturday, September 21: Cause of Kabuki on chromosome 8?
- Monday, September 29: Everybody ill
- Tuesday, October 7: Six years old
- Saturday, October 11: Family day
- Sunday, October 26: Eating some bread
- Friday, November 7: Eating some smarties
- Wednesday, November 12: Say a lot with a few words
Second time ITP
- Thursday, November 27: Low platelets count (again!)
- Friday, November 28: Still 9
- Monday, December 1: Down to 5
- Tuesday, December 2: Cause of Kabuki Syndrome
- Thursday, December 4: Platelet count remains constant
- Monday, December 8: Andy is recovering!!
- Wednesday, December 17: To the hospital
- Sunday, December 28: Good memory
- Monday, December 29: Counts down to 16 again
- Thursday, January 1: Black lips
- Saturday, January 3: Bleeding
- Sunday, January 4: Looking better
- Monday, January 5: Platelet count doubles
- Thursday, January 8: reducing medication
- Monday, January 12: Sorry mom
- Tuesday, January 13: 109!
- Friday, January 16: 136
- Tuesday, January 27: Prednisone and myelin
- Monday, February 2: Donating blood for genetic tests
- Tuesday, February 3: School report
- Tuesday, February 9: Daddy thief
- Wednesday, February 25: Going to China
- Friday, March 26: Cold and speckles of snow
- Tuesday, March 30: Andy's teachers
- Tuesday, April 27: School camp
- Tuesday, April 27: Shocking news
- Thursday, April 29: Going to the Go club
- Friday, April 30: Queen's day
- Saturday, May 1,: Potty trained
- Saturday, June 12: Wrong video tape
- Monday, June 14: Cause of Kabuki Syndrome uncertain
- Wednesday, June 16: Cars on top of the television
- Friday, June 18: Milunsky Syndrome
- Monday, June 28: Andy goes to group 3
- Thursday, June 24: Refinement of the Kabuki syndrome critical region
- Friday, July 2: Proud of his school report
- Thursday, August 5: Repeating words
- Thursday, August 19: Picture bingo
- Monday, September 20: Name!
- Thursday, September 23: Introduction evening at school
- Saturday, October 2: Shopping
- Wednesday, October 6: Chocolate bar
- Monday, October 18: Infested with head lice
- Wednesday, December 22: Christmas celebrations
- Saturday, January 1: Happy New Year
- Friday, January 14: Growing
- Saturday, January 29: Going to the city
- Monday, January 31: Sense of humour
- Saturday January 5: Dressed up as Zorro
- Friday, February 18: Snow storm
- Sunday, February 20: More snow
- Monday, March 14: Knowing the time
- Saturday, April 8: Funny statements
- Tuesday, April 12: Running 15 rounds
- Tuesday, July 5: Waving
- Saturday, August 6: De Waarbeek
- Thursday, August 18: Muppet shows
- Saturday, September 24: Seventh Dutch Kabuki day
- Thuesday, October 25: Falling down the stairs
- Friday, November 25: Lost because of snow blizzard
- Friday, March 3: New passport
- Sunday, April 2: Going into the city
- Wednesday, April 5: Kidsday
- Friday, April 14: IQ of 48
- Monday, April 24: First vaccination for China trip
- Wednesday, May 10: Visiting peaditrician
- Monday, May 29: Second vaccinations for China trip
- Sunday, June 4: Inserting a feeding tube
- Tuesday, June 27: Chewing
- Friday, July 21: Three nights
- Tuesday, July 25: Traveling to Urumqi
- Thursday, July 27: Red mountain
- Sunday, August 13: Summer Palace
- Sunday, September 3: Going to the movies
- Sunday, September 17: Peanut butter sandwich
- Sunday, September 24: Brinta
- Tuesday, September 26: More Brinta
- Friday, October 27: Talking over the phone
- Wednesday, December 20: Christmas party
- Wednesday, January 10: Marshtomp
- Saturday, January 13: Lassie and Baltasar are missing
- Tuesday, January 23: Learning to type
- Saturday, February 3: Lassie and Baltasar
- Thursday, February 8: Weather alarm: Heavy snow fall
- Tuesday, March 27: Finishes Pokémon Memory game in 43:85
- Tuesday, June 26: Andy's progress
- Wednesday, August 1: De Waarbeek
- Saturday, September 15: Eight Dutch Kabuki day
- Saturday, October 6: 14 balloons
- Sunday, October 28: Demanding pancakes
- Wednesday, November 7: Unique child
- Tuesday, December 25: Christmas
Mixture of official (hospital) and private measurements. Body length is shown
in purple, weigh in green, and head circumflex in blue.
Drag over part of graph to zoom in. Double click to restore.)
Flights he took
- July 24, 2006:
Schiphol - Beijing flight KL897 with KLM 17:10 to 08:35 seat 39A in the
city of Karachi PH-BFK, a Boeing 747-406M. Take-off at 17:41, touch-down at 10:25.
- July 25, 2006:
Beijing - Urumqi flight HU7145 with Hainan Airlines 13:40 to 17:45 seat 20F in the
B-5139, a Boeing 737-84P. Take-off at 14:20, touch-down at 18:18.
- August 12, 2006:
Urumqi - Beijing flight HU7246 with Hainan Airlines 12:50 to 16:15 seat 14D in the
B-2492, a Boeing 767-34P/ER. Take-off at 13:20, touch-down at 16:26.
- August 17, 2006:
Beijing - Schiphol flight KL898 with KLM 10:35 to 14:35 seat 38A in the
City of Freetown, PH-BFF, a Boeing 747-406M. Take-off at 10:39, touch-down at 14:04.
Andy loves video's, and that is why many of
the video's we have
were bought for him.
Links about the Kabuki Syndrome
List of abnormal features
Below a list of abnormal features is given, that we cannot recognize
as being inherited from either of our two families:
- low muscle tone
- large prominent and rather flexible ear lobule
- short fifth fingers that curve inside
- small hands
- rather lowly placed thumb
- narrow nails that curl up
- small feet
- middle toe grown slighly downward
- high arched eyebrows
- fingertip and toe tip pads
- slow motorial development with coordination problems
Family album |
Home page of his family