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Name:
Kate
Email:
katekblue@yahoo.com
Date:
20 Dec 2003

Comments

There is a lot of information on this site, but I find it very hard to find - maybe its just me! I have a 9 month old son with NS and have been trying to contact you but the links don't seem to work. i would like to join the support group, and am particularly interested in communicating with other parents in the UK. Thanks

Name:
Kristie Anguiano
Email:
kgwa1@msn.com
Date:
18 Nov 2003

Comments

Hi I am a Nurse Practitioner in Corpus Christi Texas. I had a patient today with Noonan's syndrome. Was very touched by his spirit and happiness. What do I need to know about this syndrome? Can you direct me to a special link to find this information. Thanks, Kristie

Name:
Brian Mitchell
Email:
wtmitchell@peedeeworld.net
Date:
11 Jun 2003

Comments

Hi I am Brian with NS and I am 26 years old. I am active in my church and I am a Deacon in the church. I have had several surgeries in my life open heart, eye, and back. I have worked at Wal-Mart as a greeter but had to give it up because of insurance purpose and I still work for my cousin at a plant Farm in the spring and fall in Ellerbe,NC. I am from Rockingham,NC. I love the Tarheels in Football and basketball and I like Nascar and F1 racing. If you have any questions about NS I will be glad to talk to you or if just want to talk about anything. please e-mail me at wtmitchell@peedeeworld.net

Name:
lulraka
Email:
lulraka@hotmail.com
Date:
22 Mar 2003

Comments

Name:
Yana Dimitrova
Email:
azbe@yifan.net
Date:
19 Mar 2003

Comments

nice website

Name:
Maureen
Email:
maureens@thekids89.freeserve.co.uk
Date:
13 Mar 2003

Comments

hi

Name:
Karen Burnfield
Email:
bkdm@1st.net
Date:
05 Mar 2003

Comments

Hello everyone. My 7 year-old daughter was recently diagnosed with Noonan's. Her case is very mild. It has been missed by many qualified physician's for the last 5 years. Thank God for Dr. Barthlomew at Children's Hospital in Columbus, Ohio. He diagnosed her within five minutes. She is a text book case. I would appreciate communicating with anyone that is willing. God bless!

Name:
Lizzy Miller
Email:
blade1686@hotmail.com
Date:
03 Mar 2003

Comments

Hi. im 17 yrs old, and ive been looking for people around my age that have GS, and Cleft palate, for around 8-10 yrs. i would really apprieciate it if some one would talk to me. i have never met any one my age with it, and would like to make friends. i have had 10 surguries, starting at age 10 months, and my last was oct 31, 2002(age 16). if any one around my age would like to talk, or if their are parents who are willing to talk to me, please contact me. Thanx

Name:
Brian Mitchell
Email:
wtmitchell@peedeeworld.net
Date:
18 Nov 2002

Comments

Hi, I have Noonan Syndrome. I am 25 years old and have had several surgeries in my life open heart, back, both eye operatedI graduated high school in 1997. I did work part time a Wal-Mart as a greeter but I had to give it because of insurance. I am from Rockingham, NC. If you have any questions about Noonan I will be glad to answer any that you have onyour mine. I went to the first and second Noonan conference that they had. Hope to from you soon. From, Brian

Name:
Brian Mitchell
Email:
wtmitchell@peedeeworld.net
Date:
18 Nov 2002

Comments

Hi, I have Noonan Syndrome. I am 25 years old and have had several surgeries in my life open heart, back, both eye operatedI graduated high school in 1997. I did work part time a Wal-Mart as a greeter but I had to give it because of insurance. I am from Rockingham, NC. If you have any questions about Noonan I will be glad to answer any that you have onyour mine. I went to the first and second Noonan conference that they had. Hope to from you. from, Brian

Name:
Kris Nettles
Email:
milt_kris@msn.com
Date:
15 Oct 2002

Comments

Greetings to all the moms and dads of kiddos with NS. It's a joy and a challenge to parent a child with special needs. Since kindergarten has begun for Joshua, age 5, we've experienced more challenges than I ever expected with transitions, occupational therapy, I.E.P.'s, homebound O.T. services, untreated sensory integration issues,an anxiety disorder, medications, and well, the list just seems to go on and on. Trying to discover what needs Joshua has, and ways to meet those needs, is frustrating, time-consuming, and labor-intensive. We endeavor to meet his needs because we love him and believe that the Lord desired that we would be his advocates and mentors in this life. I heard a beautiful quote that said, "The only thing God can use to make a man is a little boy." How true that is! We cannot always see the fruits of our labors, but we can pray for them. Please pray for wisdom for Milt and me, that the Lord will order our steps as we desire to raise Joshua and his siblings to lead lives that are pleasing to Him, and that we will not grow weary as we parent and champion for Joshua's rights and potential.

Name:
XPhile2868
Email:
stephensmith86@hotmail.com
Date:
29 Jul 2002

Comments

Hi, i have a very mild noonans symptomsi have noticed that many symptoms of noonans are also those of schizoid personality disorder, which i have many symptoms of.maybe there is a link?

Name:
Email:
Date:
09 Jul 2002

Comments

HI AGAIN JUST A NOTE TO LET PEOPLE KNOW THAT MY DAUGHTER LOIS HAS HAD HER OPEN HEART WHICH WAS A COMPLETE SUCSESS, SHE HAS NOW REACHED THE AGE OF FOUR YEARS OLD AND IM JUST STARTING TO REALISE THAT MY BABY GIRL HAS GROWN UP.LOIS IS ONE OF THE MOST HAPPIEST LOVING CHILD YOU COULD EVER HAVE THE PLEASURE TO MEET. I WOULD JUST LIKE TO SAY MY LITTLE GIRL IS A COMPLETE STAR SHE HAS ALMOST EVERY CHARACTERISTICS OF NOONANS INCLUDING THE STUNNING BLUE EYES,SHES BEEN THROUGH EVERYTHING FROM THE SERVERE VOMITING ,NONE EATING,HEART SURGERIES,GASTROSOMY,DEAFNESS,AND IS PROOF THAT THINGS IN NOONANS CAN GET BETTER,I KNOW THERE WILL ALWAYS BE HURDELS TO JUMP BUT I WOULDNT CHANGE HER FOR THE WORLD. LOIS WAS MY FIRST CHILD, I HAD NEVER HEARD OF NOONANS BUT WITH HARD WORK AND PERSERVERENCE WERE HERE FOUR YEARS LATER AND HAPPIER THAN EVER LOVE TO ALL AFFECTED KERRY + LOIS XXXX

Name:
maria  Silvera
Email:
maria11414@hotmailcom
Date:
02 Jan 2002

Comments

Dear God, Thank you for giving me a beautiful and sweet daughter who I love so much in a whole world. Thank you for giving us BLESSINGS everyday , thank you for helping and watching Jessica for me before, during and after her past surgeries. And I thank you for giving me a loving family who always there for me and Jessica. Thank you for giving me strenght to watch and care for my loving daughter. Thank you for having Wanda and to all who's involved in noonan syndrome organization. I believed that soon they will find the answers to all our questions about noonan sndrome. Jessica is going for surgey this month for head operation PLEASE FRIENDS PRAY FOR MY DAUGHTER JESSICA that she will be safe in surgery. Thank you Wanda I am looking forward to be there in July for the conference to meet old friends, new friends and medical doctors. Thank you all and GOD BLESS ALL.

With LOVE, Maria

Name:
Vrian Mitchell
Email:
wtmitchell@peedeeworld,net
Date:
03 Nov 2001

Comments

Hi My name is Brian Mitchell I have Noonan Syndrome. I have been meaning to let everybody know that I went to the doctor about my back before my surgery and my prayers were answered because I did not have to go through surgery on Oct. 5, 2000. P.S. my family is doing OK. We lost a love one and a special person at the end of May my cousin and myself was with him. He had a heart-attacked. From, Brian

Name:
john
Email:
johnphel831@cs.com
Date:
24 Sep 2001

Comments

My prayers are for those who had died in New York and Washington DC by the senseless acts of terrorism. The smell of death and destruction surrounds us. Help us not live in fear. Soothe the pain of those left behind and guide the souls of those passing into their next journey. Help us to mourn those gone with a full heart. Search for truth with a clear eye. Help our president and our government and all leaders of the world make the right decisions in ending terrorism. Help us to remember that even in unimaginable tragedy, Human kindness and strength remain as a beacon to the better parts of ourselves. I also pray for my wife Roscelle. That she may find strength to finish her thesis and graduate. And help her remember that, of all the decisions she will make in this world, she has a husband who loves her and will forever be there for her and will be by her side every step of the way. Please, keep her safe from harm. Lord and Lady, God and Master and Friend, help us both be strong.

Name:
Brooke
Email:
chanci9@yahoo.com
Date:
24 Aug 2001

Comments

I have a wish and a prayer today. I pray that my 2daughter's fathers realize what gifts they are from god and take an interest in them and learning about them and their special needs. I also wish that they never have to learn the awful words that society places on them for their differences. My girls are Felicia(age 4)and Delainey(age 10 months) and they are 2 of the most loving girls I have ever known. I hope that someday soon that I will be able to bring my girls to meet others w/NS so that they don't feel so "left" out when they are with others of the same age. I also want to say a prayer of thank you to god for giving people the power to come together like this for helping our kids to become anything they ever want.

Name:
andrea wynia-meilun
Email:
www.andrea_wynia @hotmail .com
Date:
19 Jun 2001

Comments

Today I must pray for my daughter Victoria, she has been ill since the day see was born. A short eleven months. June 19,2001 finally a possible answser,NS, after months of looking. Her heart mumur is worse. I pray its nothing to worry about. I pray she will be okay. Lord please wrap her in your love and keep her and us strong. She a fighter, she has been since the day she was born. If it wasn't for her brother Grayson in heaven and the rough lessons he tought me I don't know how I would be coping today. Victoria I love you soooooo much. Hang in there we have come so far.

Name:
Michelle Ellis
Email:
michellis@mkellis.fsnet.co.uk
Date:
09 May 2001

Comments

Thoughts and prayers and love go out to the Palmer family at the passing away of princess Shauna. May she always be in our thoughts. I never met Shauna but I have got to know her and the family through this wonderful group. One of the bravest strongest kids I know.

With much love

Michelle

Surrey, United Kingdom

Name:
Michelle (Mich)
Email:
Date:
29 Mar 2001

Comments

Thoughts go out to Stacey Michaels at the moment. Stacey I hope that things get better soon. Thoughts go out to Becca and Shauna and Nancy Naugle who is going into surgery on Monday.

Name:
Lorie Waters
Email:
lawaters@optonline.net
Date:
19 Feb 2001

Comments

I pray that my friend Karen's baby will be healthy. I pray that she and her husband will know the joy of raising a happy and healthy little boy!

Name:
Marlena Z.
Email:
nsmom@webtv.net
Date:
31 Jan 2001

Comments

Marlena, may you find the peace in your heart that your mom has now found.

Take care,

WW

Name:
Michelle Ellis
Email:
michellis@mkellis.fsnet.co.uk
Date:
29 Nov 2000

Comments

My thoughts go out to Stacey Michaels in Australia who has recently had a car crash and finding things difficult at the moment, Shauna in California for her continued fight with Neuroblastoma and all Noonies who continue to fight every day with Noonans.

Name:
carrie koehler
Email:
cherrycarrie@hotmail.com
Date:
29 Aug 2000

Comments

I would like to give hope to those of you with children suffering from noonans. My son cody has has 9 surguries 4 on his feet 1 on each eye and two on his groin he also has had tubes in his ears. despite all of these challenges and many more that he faces daily. Cody has started first grade today. he has such a gigantic personallity he touchs everyones life that he comes in contact with. My greatest wish is that in dealing with our childrens. Special Needs We stop to appericiate how lucky we are and how special they have become to us

much luck and love in the future Cody's mom

Name:
Wendy Durham
Email:
briankid3@aol.com
Date:
26 Jul 2000

Comments

My prayer and thoughts are with all of those who have NS. We were just told that our son most likely has NS. He is 20 mths. old and his name is Jeb. Please remember us in your prayers as we will remember you all, too. Thanks

Name:
Brian Mitchell
Email:
starnetworks.net
Date:
18 Jul 2000

Comments

My name is Brian Mitchell and I have Noonan Syndrome. I live in NC. I am facing another scoliosis surgery and I would like you to pray for me that this surgery would be a successful one because I had the same surgery two years ago and the bone did not fused like it was supposed to. I will be at UNC hospital in Chapel Hill, N.C. on October 5.

Name:
Dana & Dezmond
Email:
dt248@bellsouth.net
Date:
22 May 2000

Comments

prayers and concerns for everyone. We love you all!

Name:
Michelle Ellis
Email:
M.K.Ellis@btinternet.com
Date:
14 Mar 2000

Comments

My thoughts go out to the Palmer family aand little Shauna. I hope that things will start to look up soon. Wishing you the best of luck

Mich xx

Name:
Michelle
Email:
mich@ellism95.fsnet.co.uk
Date:
15 Feb 2000

Comments

My thoughts go our to Rachael and Mikey's forthcoming heart operation, and to the Palmer family.

Name:
Heather Biel
Email:
not   available right now
Date:
22 Dec 1999

Comments

My letter is to give hope to those lives touched by a child with NS. My baby Garrett was diagnosed with NS at two weeks of age. I was told he wouldn't survive my labor and delivery due to the fluid encompassing him from fetal hydrops. Up until I went into labor 1 month early I had a perfect pregnancy. Blessed be to God, he survived. Since then, his diagnosis & surgeries include: pulmonary stenosis(angioplasty failed--open heart SUCCESS!!), reflux(NG tube then G-tube), hydrocephalus(shunt+ 3 revisions for malfunctioning), undescended testes(so far 2 corrections-both failed), lymph node abnormalities(chest tubes twice- post surgeries). He also has many physical features of NS. Garrett is 29 months now and aside from feeding issues, he is doing great. Eight surgeries later, though still not finished, I can say that because of him my life has been blessed, difficult at times but blessed. I know that July 19,1997 could have been the only earthly day I would have had with him. Sometimes it takes going through the storms to appreciate the sunshine...no matter how long the storms persist, that one gleaming ray of light makes everything worthwhile. Becoming a single mother at 20 wasn't in my plan, nor was dropping out of college to be with a medically struggling child, but isn't it amazing that God chose "us" to give care and love to the wonderful beings we call our children..........

(Early intervention!!! Investigate!) H. BIEL 1836 SURREY TRAIL #3 BELLBROOK, OH 45305

Name:
Christy Bennett
Email:
leb501@inebraska.com
Date:
23 Nov 1999

Comments

Dear TNSSG, My name is Christy. I'm 25 years old and married to a wonderful man named Levi who is 30. We have a great 3 year old boy named Cy and 6 months ago had a beautiful little girl named Justice. That is when our smooth highway of life changed into a gravel road. When Justice was born they thought she had Turner Syndrome but soon learned that she did not. Instead, they believe she has Noonan Syndrome. In the short time she has been with us she has undergone 6 operations done at 2 different times including a fundoplacation. Justice is 6 1/2 months and 10 lbs. The doctors say they don't really know what to do next to help her gain weight. The fundo was supposed to stop her form vomiting, and it has helped some, but she continues to vomit up to 6 times a day. She has stopped taking anything orally and is now labled anorexic. I guess my pray is to help our baby and all babies to become healthy. My wish is for someone to tell me what to do to get her healthy. And my hope is that I am doing a good job as her Mommy and that all special, wonderful, loving babies with special needs are born into family that are strong, caring and excepting. We learn so much from these children. I know if I was half as strong as my daughter, there would be nothing in this world I could not do. If anyone has any advice on feeding problems or raising sibling to understand please feel free to contact me. I would really love to hear from you. leb501@inebraska.com

Name:
Wanda Robinson
Email:
wandar@bellatlantic.net
Date:
17 Nov 1999

Comments

Prayers are sent to all the special children in our lives. To Shauna, in CA. To Darcie, in MD. Also to the families who have lost loved ones. To Marjolien, and her family at the passing of her Dad. To the Smith family in MN, at the loss of Jayne Smith, an adult with Noonan syndrome.

 
 

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.