A mother's love!!

 I found this article on Google today, half when through the second paragraph I was in tears. What an amazing woman who's love for her son you can feel through her words. Many people will never understand our journey but other families walking it do. I hope this article will inspire you and bring you hope as it did me..remember to "Embrace Life One Moment at a Time"..Vanessa

To his mother, Trisomy 18 child in St. Petersburg is forever her perfect boy

For her, becoming a mother meant letting go of the things other moms take for granted: seeing her son crawl, run and jump, hit home runs, go swimming in the gulf. "I had to let that boy die," she says, "so Donnie could live." Lane DeGregory, Times Staff Writer

To read the full article click here  http://www.tampabay.com/features/humaninterest/to-his-mother-trisomy-18-child-in-st-petersburg-is-forever-her-perfect-boy/2120234

Jalyssa

Jalyssa

Trisomy ~ 1 1/2 years

I found out that I was Jalyssa had Trisomy 18 when I was about 24 weeks into my pregnancy. When I heard the news I was devastated. I didn't really know how to feel because of what the doctors were telling me. They told me that she would die in utero. After I came back to my senses and realized that they were practicing medicine and that God was the one and only true physician I started to plan her life. On September 23, 2011 I was induced and Jalyssa decided that she wasn't going to wait for the nurses or any doctors to come into the room to be born. She fell out onto the bed (good thing I was up on my knees.) She came into the world crying and breathing on her own just as my other kids did. The day after she was born the doctors told me to take her home and love on her because she would pass within the next few days. I ignored that remark and was determined to bring her home and love on her for as long as God would allow me to. Jalyssa has had to have heart surgery, a tracheostomy placed, and also a G-tube for feeding. She is now 18 months and doing wonderful. I feel that because I have kept my faith in God and allowed him to take over, I have been able to keep her for as long as I have. I don't know how much more time he will give any of us here, but Jalyssa has taught me to cherish each and every day that God wakes me up. She has also taught me the true meaning of love. Thank you Jalyssa for coming into our lives. We will cherish and love you always!!!

 We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

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Jillian

 Jillian

Partial Trisomy 13 ~ Age 6

In honor of Trisomy 13 Day, I was asked to share Jillian's story.  This is from my heart of hearts.

Jilli was born 4/21/07.  I knew nothing of her condition when she was born; but , when she was I knew something was very very wrong.  So many tests where done. A Trisomy 13 marker was present.  "Do not search this on the internet," I was told by a genetics Doctor.  I did.  Heart break. Devistation.  Please God, don't take her from me. I cried beside her for a long time.  How can I tell her sister? How can I tell my family? She had surgery at one month old. so many Doctors were coming in and out of the hospital.  Here is this label, here is that label. It seemed she was leaving me little by little.  Then some results came in saying she was partial and not full Trisomy.  What does that mean? I was told she would never smile as she looked up and smiled.  There is life here, they cannot tell me that there isn't.  So, I took her home and we started therapies. OT, PT and speech...everything I could get her.  At 9 months she had cranial reconstructive surgery.  They removed and reformed her forhead.  She had this beautiful zig zag scar across her head from ear to ear. A little boy in Walmart said it was her CROWN! You see, she is a princess too.  The days followed, the months followed and then YEARS followed.  Jilli goes to school! Jilli loves her family! Jilli loves her teachers, friends and pets.  She walks, turns on her lights and opens doors.  Best of all, she smiles all day long.  She is pure. Simply pure. So when you see my posts about her and the prayer requests for "my" other trisomy children.  Please understand, you are seeing my heart of hearts loving and fighting for these children.  My goal in this world is to change this label of trisomy.  They are not incompatible with life as the medical books say.  If given a chance, they change lives even if it for the briefest moment in time.

Jillian's mom Kara is the Administrator of Research and Support Services for Living With Trisomy 13

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

BACK TO LIVING MIRACLES PAGE

Evan Parker August McCauley

Evan Parker August McCauley

 5 lbs. 6 oz.  17 1/4 inches
March 5, 2012 6:11 pm to March 6, 2012 7:52 pm
Full Trisomy 13 with the following abnormalities:
cleft lip, cleft palate, mild bilateral clubbed feet, bilateral pylectasis, and the 

following heart defects: double outlet right ventricle, transposition of the great arteries, subpulmonary ventricular septal defect, pulmonary valve stenosis, left superior vena  cava, and dilated coronary sinus
 
 

 
At 24 weeks, we found out that our precious baby had Trisomy 13, and we had a choice to make. We chose to continue to carry our baby, our little boy, Evan. We knew it would be the hardest thing we had ever done. We did not know it would also be the most rewarding.
 

Our family had the chance to love our baby and get to know him and each other in ways we didn't know were possible. We now know a deeper love than we had ever known...for Evan, for each other, and for God.

We will cherish the memory of every movement, every kick, and every hiccup we ever felt him make. We will smile every time we remember the knock-knock jokes his brother, Owen, told him; the games of chase his sister, Nadia, would play with him; and all the songs we sang to him (especially "I Love You Like a Love Song, Baby.") I will never forget how the kids would picture baby Evan "standing up in there and dancing" as they sang to him in my tummy. Who knew you have so much fun with a baby still in his mother's womb?


We were prepared to never meet our Evan outside the womb. We thank everyone for their prayers; they were heard and answered. The Lord gave us a little fighter, and He and Evan gave us the most incredible 25 hours and 41 minutes anyone could ever ask for.  Our baby boy was absolutely perfect, and I was even granted the opportunity to do "mommy things" with him.  I was able to wash his hair, change his clothes, feed him, change 3 diapers, and, best of all, both myself and my husband were able to sleep with our baby in our arms.   Many, many people came to meet and hold him, and everyone looked at him with love and awe; he was beautiful.  Evan taught so many people so much in that short amount of time.  The day we spent with Evan was the greatest day of our lives, and it will only be topped when we are all together again.

Evan, we love you more than we knew possible. You are now experiencing an even greater love from your Father in Heaven, and that knowledge will get us through this. We love you, Evan, and we are so very proud of you!

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

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Matthew Yelton

 Matthew Yelton

Full Trisomy 18

Born Sleeping November 19, 2010

My husband and I were married in June of 08, we knew before we were married that we wanted children right away. Our first son was concieved right away and born 9 months after our wedding... Around his first birthday we decided to try for our second child. It took less then a month and we were pregnant again!! we couldn't have been happier... At 20 weeks we went to our routine ultrasound hoping to find out what we were having, they told us the baby was being difficult and they couldn't tell if it was a boy or girl but also couldn't get good pics of his heart... They told us to come back in 3 weeks and they would try again. So we did, it happened that the afternoon of the second ultrasound I also had an appt with my ob. When we had that ultrasound they didn't say much of anything except that they still couldn't find his boy parts... After the ultrasound my husband went back to work, and I went on to see the ob. That was the first day we were told there could be something wrong... The ultrasound showed problems with his heart and face. She sent us to see a perinate. In the next few days I had made so many phone calls and yelled at plenty of office people for telling me the soonest they could get us in would be 3 weeks. How CAN U TELL A MOTHER THERE IS SOMETHING WRONG WITH HER BABY AND THEN TELL HER SHE HAS TO WAIT 3 WEEKS TO SEE THE DR!!!!! Needless to say we got in the next week. With the perinate and a peds cardiologist we had a lvl 2 ultrasound and an echocardiogram done. The ultrasound showed many markers for Trisomy 18, I had never heard of it. The echo showed he (also found out it was a boy!!) had many heart defects. It was then that they told us they recommended the amnio.. The perinate was very composed about it and didn't give his opinoin until my husband asked, is it fatal? Thats when we were told that yes it is fatal and given all the markers, he didn't look good at all. We got the FISH back in 48 hours that was positive for Trisomy 18. and the full results back 2 weeks later. We connected wtih the palative care director and head of hospice. In the meantime we went back to my OB, please note that I was 20 weeks, the second at 23 weeks, the amnio and lvl 2 at 24 weeks and finally back in the see my ob at 25 weeks. She told us we should terminate, that he wouldn't make it and we were only adding inconvience to ourselves by driving to an even further hospital to continue our care and give him the best chance possible!!! I NEVER WENT BACK!! I was told by my new ob that I had a condition called Polyhydromosis (SP) , which meant I was going to get very big, (I was already measuring ahead) because I had alot of amniotic fluid. He was supportive and behind us all the way. Matthew made his early arrival at 33 weeks, very much so alive and kicking right up until the end. We lost Matthew durring delivery. There are so many what if's and regrets. He never had the chance to fight. I love you Matthew Leon. We will never forget, everything I do, I do for that lil boy!! A peice of my heart died that day, it broke right off and went to heaven with my precious son. I know that one day I will have that back, the day we meet again.

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

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Lillian Eva Hollowell "Little Firecracker"

                                          

Full Trisomy 18

July 4, 2010 ~  December 15, 2011 

Lillian Eva Hollowell, was born on Sunday morning, July 4, 2010.  “Lilly” lived a very full life for 17 months before passing away gently on Thursday, December 15, 2011. Her entire life was a glory to God.

Our “Lilly Sunshine” had an intense will to live which she showed from the start.  She was motionless, breathing weakly, for the first hour after being born, but then let out a big cry, and let us know she wanted to stay.  It being Independence Day, she got the nickname “Little Firecracker.” 

Due to a genetic condition called Trisomy 18, or Edwards Syndrome, she had heart damage and a very weak immune system.  She got very sick and had to fight very hard for her life a number of times.  However, she was well more often than sick, and a very happy little girl.  She loved her family and her daily routine.  She was quick to smile, very content, and loved life.  Lilly blessed countless lives and touched many hearts.  We are all better people because of Lilly.  We rejoice that she is now perfect and whole and in the arms of Jesus.

Lilly’s family misses her greatly and looks forward to the day we will see her again.

Lilly’s proud parents:  Frank and Lisa Hollowell, sister Tabitha (10 years), and brother Hunter (3 years).  The family lives in Fuquay-Varina, North Carolina.

Lilly’s blog has readers from all over the world:  www.pray4lilly.blogspot.com

                                                                          - - - -

The above is a modified version of Lilly’s obituary.  I wanted to add some details about Lilly’s life, which I thought would be of interest to other Trisomy families.

We first learned that Lilly might have Trisomy 18 during a   Soft markers were identified: she was a very small size and low weight, she had clenched hands, a heart defect, a spot on the brain, there was lots of amniotic fluid, and the umbilical cord had only two arteries instead of three.  After a couple more ultrasounds, I agreed to have an amnio.  We wanted to confirm one way or the other, so we could better work out a plan with doctors for delivery.  (I had a midwife but doctors got involved with us once Lilly’s problems were identified.)  Once the amnio confirmed Lilly had Trisomy 18, the doctors took a hands off approach.  Lilly was in Frank breech position and the doctors amazingly even gave permission for her to be born naturally.

routine ultrasound.

My labor and delivery with Lilly was quick - only 1.5 hours total.  She was born breech after only a few minutes of pushing.  She was barely breathing and motionless for about an hour and then really came to life.  She was able to drink well from a bottle.  Doctors let us leave the hospital within six hours (unheard of!) so we could take Lilly home to meet her siblings.

Six days later, Lilly had a number of episodes on afternoon where she stopped breathing and turned blue.  My husband had to blow in her mouth and nose to bring her back.  Then episodes stopped and never returned.  We briefly had hospice service but then cancelled after a couple weeks.

Lilly’s heart had a large hole and she just didn’t have the strength to drink breastmilk from the bottle like she needed to.  She started losing weight and seemed to be in pain off an on.  When she was two months old, we traveled to Wolfson Children’s Hospital in Jacksonville, Florida for help.  (We live outside Raleigh, North Carolina but could not find the help we needed here.)  At Wolfson’s doctors put Lilly on an NG feeding tube and pump and she began gaining weight again.  Lilly needed VSD repair but she was just too weak, so a pulmonary artery band was put on her heart.  We brought Lilly back home and she really began improving. 

During Lilly’s life she had two viruses, both of which nearly killed her.  But to the doctor’s surprise, both times, she fought her way back to health.

Lilly had a g-tube placed and when she was old enough, I put her on a diet of blenderized real foods.  That helped her to thrive.  She also had both occupational and physical therapy each week and she loved that.  She was a hard worker.  We had hoped to start therapy to help her learn to eat by mouth.  (She only liked eating coconut oil by mouth.)

In November 2011 we returned to Wolfson Children’s Hospital and Lilly had surgery to repair her VSD.  We found out at that time that her heart had two holes instead of one.  Lilly recovered quickly and was out of the hospital in 9 days.

On December 5, Lilly’s breathing was odd off and on during the morning.  I took her to the emergency room and asked for a chest x-ray.  It revealed white spots in the chest.  One doctor suggested heart failure but her cardiologist said her heart was functioning normally.  I took Lilly home and started nebulizer treatments.  Lilly saw her pulmonologist two days later and the white spots had become a white mass behind her heart.  However she was acting just fine so we went back home.  She started an antibiotic, continued nebulizer treatments, and I kept a pulse ox hooked to her when she slept.  She continued to act like she was feeling fine.

On December 15, Lilly seemed to be feeling extra good.  She had physical therapy and her therapist remarked that Lilly seemed to be the most energetic she had been since coming home from heart surgery.  I took a video late that morning of Lilly in her bouncy seat playing with her animals hanging from the arch, and posted it on her blog.  Later that afternoon, my husband came home early because he had had a dentist appointment.  I had him put Lilly down for her nap for me.

She never woke up.  When I went to get her up that evening, she was dead.  Paramedics came and tried to revive her.  But she was already in heaven.  We were honestly surprised she passed away that night, but we continue to thank God that He took her so gently.

We had 529 glorious days with Lilly in our arms.  We are so grateful to God for every second.  What an amazing little girl she was and what a blessing to us and so many others!  Thank you God for creating Lilly to be our daughter.

To follow Lilly's family and what they are doing now please visit her blog

www.pray4lilly.blogspot.com

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

BACK TO TREASURE MEMORIES PAGE

Luke Mengel

 Luke's story; Written by his Dad Saturday; December 15, 2012

Here is a lovely story of a child diagnosed with Mosaic Trisomy 13 in his teenage years. I hope that this story will bring faith and encouragement of survival to many parents facing a difficult diagnosis. 
  

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith.- Author Unknown

 

 Luke was born on Thursday June 30th, 1994 in Rio Rancho, NM.

My beloved wife Linda came into the living room saying she thought her water broke. "It's too soon!"... seven weeks too soon. We had had a difficult pregnancy, this one a surprise. We had at the time our two other sons, then 13 and 11.We had been worried about all her swelling and water weight, she was very uncomfortable. Doctors had wanted to do an amniocentesis but we decided not to do this as we were determined to keep what God had given to us to raise, and there were risks to the baby. She was 39 at the time and the doctors were concerned about the baby..

We rushed to the hospital, Luke was born within the hour. He came in at a solid 2 lbs 12 oz! Such a tiny life God had given to us. Our other 2 sons came in at almost 9 lbs (despite my petite wife! she was just shy of 105 when we married ). At the same time, my wife's liver shut down... they rushed Luke to the NICU and my wife to another room. I was shuffling between the two.. did not sleep very much for 2 days. My wife stabilized 2 days later, her liver was recovering. She had had pre-eclampsia toxemia.. She had not held Luke yet. Luke was in the NICU on oxygen.. he was tiny! He was shaped differently than our other two boys. His feet were oddly shaped and appeared to have big toes that were definitely different.. He also had a tiny sixth digit on his right hand just adjacent to
his pinky. His head was different (still is!) but all the rest of his parts looked normal. He was breathing on his own but needed some help with oxygen. Other than that he was just tiny..

We named him Luke after the Dr. Luke in Scripture. The Nurses called him Luke skywalker.. the nurses were wonderful. For the next 44 days we watched Luke prosper.. my wife was pumping milk into hundreds of tiny bottles.. Luke was being fed  for the first week or so by gavage along with the tiny bottles.. later came my wife's breasts after Luke got a bit stronger. Luke's doctor (neonatologist) was a homeopath and we did nothing very special with Luke other than hold him as much as possible
and feed him whenever he wanted.. he needed to grow!

44 days later we brought Luke home on oxygen and a long tube.. He was a solid 4 lbs. We treated him like we did when the other  two were young..as a growing precious son. None of our boys really slept through the night for 2 years.. Luke was no different, but had to be fed much more often. He began to grow.. but at a different rate, way off the chart.. but following the shape chart for the most part.

Luke began to crawl (very odd crawl using his head as a balance point, he wore the hair off his head where it touched the floor..) very late and began to walk (wobbly) at ~15mo... and babble.. he was trying to talk but few could understand him.. but my wife. Luke was breast fed for over 2 years..

Luke grew slowly, at 2, because of my work, we moved to Virginia. Linda began to see that Luke was not progressing like the other 2 boys.. and was concerned about his growth and boy! was this kid wound up... he never stopped... She called the School System and they suggested a visit by an Early Intervention speciallist. Luke began pre-school, kindergarten, and then 1rst grade (twice). IEP's started. Preliminary Psychological exams showed Luke was MR (Mentally Retarded (old term back then), Intellectually Delayed ). They wanted him in an MR class.. we fought this with the School system and had Luke mainstreamed.. This was a boon! Luke learned, albeit slowly... we worked with Luke extensively on his school work EVERY day..

...skip several years... Luke went through Elementary, Middle School and First year of high school...) Luke was passing his SOL's, played soccer, played the trumpet (mainly by ear..)... BUT was almost always socially inept and mercilessly picked on (he was still VERY small). And extremely active... he was also very moody.He had great difficulty in crowds and in social situations. We could never have company at home as he acted out all the time. Because of his activeness his pediatrician and several psychologists thought he was severely ADHD.. Luke was on Concerta for over 8 years.. there were side effects, anger etc.. He also stopped growing. 7th grade. We went to endricrinologists.. nothing we can do..something in his genes, Luke will always be the height he is for the rest of his life (almost 5 ft tall). Luke began to get into trouble at school, was very angry all the time and
began to do very odd things.

June, Summer of 2011. Luke just out of his first year in High School. He wrestled in the 112 lb class (because he was so small). He really never won a match.. but gave it his all! He moves very stiffly.. Because he was the only 112lb kid and wrestled varsity, he actually lettered. HE also marched in the marching band playing trumpet.. but he was socially inept. Kids still picked on him and he struggled to be part of any group he could get his head into.. Long story short.. he became extremely unstable Mentally and did very dangerous harmful things and acted in bizzare ways...

In June of 2011 Luke was admitted to a Child and Adolescent Psychiatric Unit and then a residential school where he continued High School. He was diagnosed with severe mood disorder NOS. The doctors did not know what to do with Luke.. he was not responding to any of the psychotropic drugs, and None of the cognitive therapies were working.. One of the Psychiatrists noted that Luke "looked" odd and had a notable childhood.. he suggested we try to have genetic testing done. In Sept of 2011, after a long wait for an appointment we had Luke tested at the University of Virginia Genetic Lab. A month later tests came back showing several genes had issues... they wanted to sequence
more and requested another blood sample from Luke in March of 2012. Note: (Getting Luke to and from the appts was a real nightmare) After the second testing late in March.. we got a frantic call from the Genetics lab..

Note: I then worked for the University of Virginia as an IT Systems Director...

Ring.. ring... Hello? "Mr. Mengel, this is the Genetics Lab. We have some unexpected results from the testing, we need to see you on Monday.."My mind is running...This was an alarming call as normal results take 5 -10 weeks to get the results.. and appointments took months... and they wanted to see us on Monday!? What are the unexpected results? " We will tell you this on monday.." Can't you give me some idea? " Well... long pause.." We have found an unexpected result and have run the tests twice on both samples of your sons blood..." long pause.. " we have found your son has genetic
disorder called Mosaic Trisomy 13, we will explain this to you on Monday. Do NOT bring Luke."
Ok.. thanks... my mind is racing.. what the hell is Mosaic Trisomy 13.

So, I'm an IT guy.. I search for "Mosaic Trisomy 13" .. With tears in my eyes and a shaky voice I call my wife.. shocked. I could not work.. I packed my things and went home.

Monday, we met with the Geneticist. They had neglected to run a simple Karyotype test as a base line, this test was run several times on at least 2 blood samples months apart.. as they could not believe the results. They indicated that they had never seen a LIVING 17 year old with Mosiac Trisomy 13 and that Luke was especially rare.. We were told it is not our fault. It explains ALL of Luke's problems..

I called Luke's Psychiatrist at the Treatment Center to give him the news.. Doctor, Luke has been diagnosed with Mosaic Trisomy 13. "What! No, this cannot be correct..." I said: Here is the Doctors number.. please call her. .... He called and recognized that there are things he did not know..

We had extensive Cardiologic exams..after this devastating diagnosis. Luke is completely normal. Luke is currently awaiting MRI testing. His EEG's show some abnormalities.-

Luke was on almost every psychotropic drug.. except one.. that they were afraid to begin. Luke did not improve, but exhibited ALL the massive side effects of these drugs.. We learned the hard way that Psychiatrists were just making educated guesses as to what "might" work.. Well, just at the tail end of Luke's stay at the Child Adolescent Treament center, they tried the LAST drug.. Lithium. It worked!

Today, Luke is at a special school called Grafton School in Berryville Va. We had to move him there after he turned 18 (we obtained guardianship through the courts). He is somewhere between a Sophomore and Junior in High School.

Also, of note. At Grafton the Psychiatrist, more of a progressive sort. Had us participate in a pilot program called GenoMind to see if we could refine Lukes medication regimen. She was also weary of Lithium.. The tests confirmed that Lithium was the ONLY drug that could have possibly helped Luke ... wow.. (see www.genomind.com).

He has not been home in over a year.

We will be trying to bring home Luke for Christmas this year (2012)! We tried last year too (while he was in another Residential treatment Center)
but it did not work out.. Luke melted down and ended up back in the hospital. NOTE: I have much to say about the treatment of those with Mental Health disorders.. something is just not right in this world we live in..

Anyway.. We are joyful that God has given to us this son. Sometimes this joy is painful (I don't know how else to say this).
We do not think that Luke will ever be able to come home full time any longer.. but have high hopes that he can learn a vocational
skill and live in a group home where he will prosper. He is a living Angel! God has special things in mind for Luke!

Hope this helps someone here.. these Angels do live!. We would be willing to talk or correspond with anyone.

I am becoming very active in NAMI, ARC of Virginia, Mental Health Association of Fauquier County, Department of Social Services... various School related concerns.. I am a Parent Advocate. I support agencies that help people with needs obtain resources like the Virginia Office of Protection and Advocacy (VOPA). I am also 56 years old.. We are on the medicaid id waver wait list.. Obtaining services is a REAL problem.

May God bless all those with Angels! Both living on this earth and those with God.

Guy and Linda Mengel ( guy@eastroad.org )

You can see many of our family pictures here: http://www.flickr.com/photos/bombadillo


Summary: Luke: Age 18
Mosaic Trisomy 13
Hearing impaired both ears
Slight Deformities in feet (rocker bottom, toes overlap)
Mildly ID (68)
Severe Mood Disorder (NOS) organic

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . 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, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa

BACK TO LIVING MIRACLES PAGE

Prayer Requests

A PRAYER FOR A SICK CHILD

St. Gerard, who, like the Saviour, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our son/daughter and ask Him to restore our child to health if such be His holy will. This favour, we beg of you through your love for all children and mothers.
Amen. 

Thank you dear Lord Jesus, for the gift of our children. You have graced us
beyond our comprehension. Please guide us in the care of these Treasures. Give
us wisdom to make the best decisions for them. Give us patience and charity so
that we can advocate for your precious ones. Give us fortitude, so that we will
not give up before it is time. Give us peace when our hearts our troubled with
worry. Bless our children with all that they need in this life.
And for our children who have gone to be with You, thank you for holding them
in eternity as tenderly as we held them on earth.

I asked our families this week to let me know if they would like to add a prayer request for their child. Many parents responded to my request. I will list all the requests below but I would like to acknoweledge one request first.

Sweet Presley's mom had asked for prayers for her son here is what she wrote..."Presley is trisomy 13 and is in the hospital. He's 16 weeks old and down to 4lbs. The doctors gave up on him and he's fought so hard but with no one helping in his fight his poor body can't do it alone. Please pray for peace and no more suffering."...Sadly baby Presley gained his wing before I was able to publish this weeks blog post. I am now asking that you prayer for his family for comfort and peace as they embark on the next step of their journey.

• Prayers for Brilen who is currently hospitalized
• Nathaniel Johnson (Trisomy 13) has been taken by the state and put in a foster home. Mom has only seen him once in 5 months. Please pray that he will be home with his family soon.
• Tiffany Lauren Williams 24 prayers for her to keep up her oxygen levels up
• Pray for Natasha her heart later is getting low and mom is scared and asks for prayers to keep her out of the hospital
• Angel is hospitalized with RSV and is having a rough time recovering
• Prayers for Trinity that she will be able to wean off the vent and be home with her family
• Audrey Olivia...She's in the hospital with an RSV and is back on oxygen
•  Please pray for Kaela Stobbe age 15mos Full T18...not sick at this moment but lower 02 Sats a lot lately and more tired..concerned she is starting resp failure....she has a large VSD and 3 ASD's with pulmonary hypertension...cannot repair heart...also a Thyroglossal cyst that is growing
• Wassim is in the hospital after cardiac arrest early this week
•  Please pray for Owen Tidwell. He is six months and if he can make it to Monday it will be the longest stretch not in the hospital since he was born. Today his color looks off even though his sats are good so pray he is not getting sick again

Prayers for comfort for all the families that are currently pregnant and just received the Trisomy diagnosis. There are many other children that are in need of prayer that are sick and hospitalized, please remember them all in your daily prayers.

Next week we will feature some great FREE resources and products for special needs children.  Until then....Embrace Life One Moment at a Time!