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154) michelle walker 
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Tuesday, January 25, 2005 02:52 AM Host: Write a comment

After reading the story of Alexis, it has inspired me to share a few of my own experiences. My little baby boy Dylan was born last august 2004, a healthy, beautiful human being. 2 weeks later we settled at home, and were offered a blood sample test for Dylan which would detect any of 5 conditions, Mcadd was one of those conditions, the symptoms of Mcadd looked horrifying, but the midwife assured us that it would be highly unlikley, approx 1 in every 10 to 20,000 births.
When we found out that Dylan had Mcadd the doctors couldnt believe it, he is the first baby in yorkshire to be diagnosed at birth. The national health service have only tested for Mcadd in the Uk since march 2004 and are only doing so in half the country as a trial. I truly believe that by knowing that my baby son had mcadd from this age has saved his life. when we know about mcadd it can be managed so successfully, we fed Dylan every 3 hours from birth to avoid long periods of fasting and now have an emergency plan in place if he dous become quite ill or doesnt take his milk. He doesnt require any medication , he just needs to eat. If we can help people understand Mcadd and continue to test babies at birth for the condition then we will help save the lives of our children . x
153) Rayann Brown 
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Thursday, January 13, 2005 05:25 PM Host: Write a comment

Thank you for sharing this information.
152) Stephanie Hager 
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Monday, January 10, 2005 09:35 PM Host: Write a comment

God Bless You! My son Cade was born 2 months after your beautiful & precious angel passed. Our state does the bare minimum of testing. Fortunately, he survived his episode. He only had an Upper Respiratory Infection, but I caught him seizing and made it to the hospital in time. His blood sugar was only 12. He was diagnosed about 3 weeks later.
151) jackie 
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Thursday, January 6, 2005 03:49 PM Host: Write a comment

my son has mcadd also.
150) Toni Treworgy 
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Thursday, December 30, 2004 07:35 PM Host: Write a comment

Dear Kris,
What a sad, yet beautiful story your web site tells. Hopefully through your pain other families will not have to endure what you have endured. This is what will keep Alexis alive forever. God bless you all.
149) laurabeth 
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Saturday, December 11, 2004 02:33 PM Host: Write a comment

I am so sorry to hear of your sweet daughter. I have couldn't imagine your heartache. Thank you for the focus on such an important matter we all need to know about for our children. Your effort has all ready made a difference and will come back to you many fold. Bless you-
148) Tracy Richardson 
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Wednesday, December 1, 2004 05:43 AM IP: Write a comment

I am extremely saddened to hear of your loss of your beautiful daughter, Alexis. Almost 2 weeks ago now my daughter came down with a bout of gastro and refused to eat anything. As she was still vomiting 24 hours later I took her to the hospital where they couldn't find anything wrong with her and sent us both home. The next morning I went into to find her breathing but completely unresponsive. I again took her to the hospital where she was immediately tested for several possible causes but none were found. Later that day we were flown to Perth, Western Australia and taken to Princess Margaret Hospital for Children where more tests were run and she was eventually diagnosed as an MCADD sufferer. She was extremely lucky as they noticed in Albany that her blood suger levels were dangerously low and so she was given glucose to try and get her levels back up. After 40 hours in a coma she woke up and has as far as we can see returned to her normal self. I thank my lucky stars every day that we were given the chance to have her return to us and that we will see her grow to become a beautiful person.
147) Tabitha Salas 
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Wednesday, November 24, 2004 12:45 PM Host: Write a comment

I am so very sorry to hear about your daughter, Alexis. I had a daughter named Alexis and she was diagnosed with a tumor on her brainstem on her 5th birthday. She joined heavens angels on January 7th 2001. She has a twin that just turned 9 sunday november 21. I love the Heavens angels in angelrays. That really hit my heart. Again I am sorry for your lost. Best wishes to you and your family, Tabitha Salas
146) Jennifer 
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Tuesday, November 23, 2004 08:42 AM Host: Write a comment

Thank you for sharing your story! Kelly, I met you briefly at the Baby Expo in O.P. and I've finally got a link to your site from mine. I have a section of my company dedicated to fighting childhood diseases and will make sure to always include info about supplemental screening.
I'm so sorry for your loss. Thank you for turning your tragedy into something good.
hugs, Jennifer
145) Tim Mitchell 
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Tuesday, November 9, 2004 05:33 PM Host: Write a comment

Very nice web site and I am very sorry about your daughter. I have an 8 week old who has MCADD. Luckily it was caught on newborn screening. In IL, the screening was made mandatory 2 years ago, which was nice. We are now going through our first "problem" as my daughter got sick and could not keep anything down. She is currently in the hospital and doing pretty well. It is still a challenge since many doctors are not familiar with MCADD or the treatment. The doctor who managers my daughter MCADD is out of Chicago and has been very helpful during this time. I think progress is being made.
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Sunday, November 7, 2004 05:40 PM Host: Write a comment

143) Mrs Jill Bethwaite 
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Wednesday, November 3, 2004 01:37 PM Host: Write a comment

I would like to send my regrate for the loss of your beautiful daughter. my daughter is 9yrs old and was diagnosed with MCADD at 8mths, after falling ill with Gastro enteritas. It took 3 days till we new what was wrong, 3 days living in limbo! Shannon my daughter was nearly sent away from the hospital when we took her to primary care. I was classed as a over protected mother, but you know when their is something wrong with your children. I insisted for a second doctor to look at her. luckly we were sent to the childrens ward, BM tests were not carried out on Shannon so she went hypo within an hour, her blood sugars droped to 0. Luckly we were in the right place. Im sure your daughter will live on for ever with all your memories of her, and within everbody who reads about her. all my love to your family and your lovely daughter. God bless.
142) Crissy 
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Sunday, October 31, 2004 07:12 PM IP: Write a comment

May God comfort you with the knowledge that your daughter is now an ANGEL in heaven! I have three sons (3,5,6)and can not imagine loosing one if them.
I am going to have them screened for this at their next appoointment.
Thank you for sharing your story and bringing awareness to so many people.
141) Ed Doyle 
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Saturday, October 16, 2004 08:52 AM Host: Write a comment

I just lost my daughter Charlotte who would have been 20 on Sept 14 who pased away in her sleep due to severe Epileptic seizures. I know it not the same afflication but I wanted to tell you this. I had found some of the poems on a website Angelrays, and they said so much of what was in my heart for Charlotte.I hope you understand how much your daughters site has given to me and in return all I can say is Thank you Alexis,Gods blessings for us all.

140) Candice 
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Wednesday, October 13, 2004 01:43 AM Host: Write a comment

So very sorry for your loss. I am 12 and i have a baby brother called Joshua and if anything ever happened to him i would never forget him and i will remember Alexis too as a beautiful Angel and princess
139) Malcolm & Rachel 
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Saturday, September 25, 2004 04:20 PM Host: Write a comment

We have two children with MCAD , Cameron who is nearly 5 and Ronan who is 3. Cameron became very ill and was diagnosed with MCAD at 20 months old, and then they tested our other children and Ronan tested posotive for MCAD. We feel after reading about Alexis we are very lucky parents and our hearts and thoughts are with you.
138) Mary Jane Wingett 
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Sunday, September 19, 2004 06:58 PM Host: Write a comment

Kelly and Jason,

I just wanted to let you know that on August 26, our son, Jason, and his wife, Miranda had an 8 lb., 8 oz. girl. Abigail Booklyn had to remain in the hospital for a week because she had jaundice. Since she was being pricked twice a day to check her bilirubin count, the doctor decided to wait until she was a couple of weeks old to run the supplemental screening. The blood work was done and last week the results came back -- all tests were negative. We thank you for making us all aware of the screening. We think of you often and hope that God and time are helping to ease your pain. Alexis was indeed an angel. God bless you.

Mary Jane and Garry Wingett
137) Liz Auston 
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Friday, September 17, 2004 02:36 PM Host: Write a comment

Thank you so much for this site. I am so sorry you lost your beautiful little girl. Our daughter was discovered to have MCAD after going into a hypoglycemic coma after a mild tummy flu. We nearly lost her and I often remind myself of those moments when I prayed to God to let her stay with me. By fluke, or perhaps, quick thinking on the part of our ER physician (we live in a small town North of Toronto, Ontario), they checked her blood sugars and found them to be 0.8 and getting over their own shock, put my daughter on some super glucose solution through IV that revived her. I wonder at what possible physical and brain damage my own angel might have sustained while in that coma--and only time will tell. For now she seems just as bright and sassy as before--and we are forever thankful that she is still with us today.

thank you again for your wonderful website.
Liz Auston
136) Darci Allee 
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Monday, September 6, 2004 08:39 AM Host: Write a comment

Joseph Louis Allee (JOEY) was born May 20, 2004. About 36 hours after birth he had several seizures and was rushed to CHOC NICU. He remained there for one week and no answers were discovered. We were assigned to a neurologist and began seeing him monthly. At his August check, Dr. Phillips just happened to be looking through his chart and discovered some elevated blood levels. We were immediately sent to a metablolic specialist who just happened to be available that day, that hour. He saw us and explained MCADD to us. Joey had his blood drawn and so did my daughter, Lucy Anne age 2 1/2. We received the call the next day confirming Joey's MCADD and the good news that LUCY was MCADD free!!! We are still in a whirlwind of emotions and doctor's appointments and today we face Joey's first cold. It is a miracle that we even discovered Joey's MCADD, because you see one week before this Joey was sleeping through the night (10-12 hours). God was watching over Joey. We now pray daily for Joey and other children who have been diagnosed or undiagnosed with MCADD.
Sincerely full of hope,
Darci Allee
135) amy 
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Sunday, August 29, 2004 10:59 AM Host: Write a comment

Hello, I just had a new baby boy by the name of Ashton. My cousin is a Dr. in Miami FL and had called me and told me I needed to get the mcadd shot for my son he said it might be $100 or so but that it was very important to get this done. When Ashton finally arrived I had $ in hand at the hospital to get this life saving shot for my son and low and behold there is not one facility in the whole state of Flordia that offers this! I asked the Dr. why and he said there hasn't been enough cases of the disease in FL to have it here!! In other words not enough children have passed from this. I can not believe the state of Florida could be so selfish. I'm trying to find out what I could do to get it here if anyone has any ideas please email me and let me know. This is horrible!! God Bless
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