Thursday 05/22/2003 10:02:01pm
Name: Auntie Shan
City/Country: Edmonton Canada
Comments: Happy belated birthday, Bunkin! you sent Uncle Erroll and I a new little person to play with, who was born a day before your birthday! Our new nephew has fat little cheeks, just like you have, and he made me miss you so much. We love you! You made my life so happy, and I will always be grateful that I got to be a part of your life, no matter how short.

Tuesday 02/11/2003 1:59:21pm
Name: Yahoo store design
City/Country: New York, USA
Comments: Your site design very well. Thank you. Yahoo store designer

Monday 02/03/2003 6:23:04pm
Name: shaina rappoport
Homepage: http://www.ourshootingstar.com
City/Country: florida
Comments: ilsa was so beautiful! my son jacob also passed away from sma, type 1. he was nine months.

Monday 12/23/2002 9:04:38pm
Name: Donna Parliament
City/Country: Canada
Comments: Hello My name is Donna.I too have a special angel her name is Michaela. She is 3 yr. old and she has not yet been diagnosed with SMA, but she has all the symptoms of type 2. She has been in hospital for the last two weeks on oxygen she has had her second G tube put in.She has constent resperitory problems. Oh I'm sorry I am going on but I am a grandmother just hanging on to prayer.

Thursday 12/19/2002 9:34:31pm
Name: Melody Malpas
Homepage: http://www.sawyersmithfoundation.com
City/Country: Spanish Fort, AL
Comments: I am the webmaster of the Sawyer Smith Foundation's website. Sawyer was an SMA angel that lived 10 moths with SMA type 1. His parents have formed a foundation to help support research and aid families of SMA angels. Your daughter is a beautiful baby. You are in my prayers.

Friday 11/22/2002 8:55:40am
Name: KENNETH JACKSON
City/Country: VICI,OKLAHOMA
Comments: I was doing a researchpaper on sma and ran acrost this site.I am interesed in trying to help others with sma, and was wondering if I could have some info on it. kenneth jackson

Friday 10/25/2002 11:48:54am
Name: Courtney Osborn
City/Country: Wildwood, MO
Comments: My best friend has S.M.A., her name is Sarah, and she was Jerry Lewis's poster Child last year. Sarah just had Spinal Fusion, and it was scary! She made it! I'm 11, and Sarah is 9, I have wriiten a story about Sarah. I send my wishes!

Tuesday 08/06/2002 8:39:49am
Name: Carol Briggs
City/Country: Chicago, Illinois
Comments: What a beautiful girl Ilsa May. I have a little nice 4-1/2 months old diagnosed with SMA type 1. I can only imagine the pain that the parents go thru. My niece is at Miami Children's Hospital at the moment. She is on a ventilator and resting confortably for the moment. She was mis-diagnosed with Gillian Barre sindrome, but now it has come to light that she has SMA Type 1. She was not improving in spite of the therapy she was receiving. My heart just aches for my sister and her husband. They can't bare to live without her. Don't know what I can do to confort her. Lord, please have mercy. I just can't stand seeing my sister go thru this.

Saturday 08/03/2002 6:27:09pm
Name: kristy henry
City/Country: simi valley, U.S
Comments: your daughter is beautiful. I have a nephew with SMA type 1 and I know the heartache that your family went through my prayers are with your family. thank you for sharing her,

Wednesday 07/31/2002 8:43:37am
Name: Tiffany Hawkins
City/Country: amsterdam,Ny
Comments: I Love Ilsa's Video.I never really understood what this diease was. Know that i Know i feel so bad for you and your family to have to go through this.

Monday 05/20/2002 11:53:42am
Name: Janene Horne
Comments: Ilsa was beautiful. I, too have a beautiful angel just diagnosed with SMA type 1. Joshua David is 7 weeks old today and is already on oxygen and nebulizer treatments. I do not know what to expect and am scared about the future. We know the outcome and have entrusted Josh is God's hands, but each day is harder because we just fall madly in love with him even more... Would like to hear from you if you have time. Janene

Friday 05/10/2002 1:54:06pm
Name: Ilsa Danielson
City/Country: Illinois
Comments: My name is also Ilsa, and I feel as though I have a connection to the baby, Ilsa. I thought I was the only Ilsa out there, but I guess not. My heart goes out to the family-best wishes!

Saturday 03/30/2002 7:02:01pm
Name: Elio and Hilery Brandelli
Homepage: http://none yet, can't find anyone to do it !
City/Country: Edmonton, Alberta
Comments: It's been two years and we still remember Ilsa everyday. Your parents are still strong supporters of a cure for SMA, and they miss you very much, as we do as well. Hope you are having fun playing and running around in heaven :) Time has passed and places may have changed, but you are still in our hearts. Love you always, Elio, Hilery and Larissa Brandelli

Monday 03/18/2002 11:19:08am
Name: AYANNA BOYD
City/Country: DETROIT, MICHIGAN
Comments: You have a beautiful daughter. Notice that I did not use the word "had". Ilsa is looking down and smiling because she knows that you fought for her not only in life, but that you continue to fight for her in death. I was doing research on Werdnig Hoffman's syndrome for one of my nursing classes and I came across your story. I just want to encourage you to keep educating people such as myself to learn more about a disorder that is not commonly discussed. You and your family are in my prayers. I pray your strength in God that he will continue to bless you as you continue your educational fight for Ilsa. I have learned so much just from reading your story. You have encouraged me to pass Ilsa's story on to the rest of my classmates in hopes that they too will learn something from Ilsa's life on earth. God Bless You.

Friday 03/08/2002 9:10:53pm
Name: myra macareno
City/Country: kingsville, texas
Comments: I also have a son with sma type1 he is five years old and i also have a two year old son that thank god he is healthy.Rudy my five year old is on a venalator and has a gastrostomy tube for eating but goes to school and communicates with his eyes,facial exspressions and sounds.

Friday 01/04/2002 10:59:07pm
Name: Sheryl Kessinger
City/Country: Turtle Creek, WV USA
Comments: My friends baby has this and probably has only 3-6 months left, I wish there were a cure for her...she's heartbroken.

Wednesday 12/12/2001 11:46:28am
Name: Janice Dyment
City/Country: Leduc
Comments: Wasn't she a beauty!! Thank God you had her for as long as you did. She obviously taught you MUCH! In God's Care. Always.

Tuesday 11/20/2001 10:14:06am
Name: eric hammarstrand
Homepage: http://user.tninet.se/~yry038r/
City/Country: SWEDEN
Comments: the most beautiful girl that I have ever seen. I have also sma and I am 15 years old.

Monday 11/05/2001 9:28:57am
Name: sarah amie and mathew bacon
City/Country: england
Comments: what a beautiful little girl. my daughter charley passed away 1st aug 1998 aged 7 mths with sma type 1 and she is missed more each day. i hope one day soon a cure will be found until then my heart goes out to all the families going through this nasty illness

Sunday 10/28/2001 4:09:27pm
Name: Kylee
City/Country: Moe, Australia
Comments: IIsa is just gorgeous. We have just lost our 7mth old son Josh to SMA. We believe that we were blessed to have him & live with his memory in our hearts.

Monday 09/10/2001 2:29:29pm
Name: Anki Karlsson
Homepage: http://medlem.tripodnet.nu/lillaisa
City/Country: Sweden
Comments: What a pretty girl. Just like my Isa. She died of SMA1 when she was 8 months. I really hope someone find the cure.

Friday 09/07/2001 2:41:03pm
Name: Shaista Patwardhan
City/Country: Edmonton, Canada
Comments: Truly an angel!

Tuesday 09/04/2001 9:26:24am
Name: Niesl
Homepage: http://www.niesl-online.de
City/Country: Germany/Bayern
Comments: Hello! I´m Niesl and i´m 4 Years old! I have SMA TypI/II! I live in Germany! Ilsa was a wonderful Girl! Bye Niesl Sorry, my english is not good!

Friday 08/24/2001 3:14:02pm
Name: Stephanie Kozak
City/Country: Milford, Delaware
Comments: My daughter Kourtney was dianosed with SMA Type I in May. She is currently 5 and 1/2 months old. And her condition is currently stable. I can only imagine the pain of your loss and I pray every day that we will be spared that heartache. You and your family will be in our prayers. God bless you. Stephanie

Thursday 08/09/2001 9:59:32pm
Name: Tracy & Jackson
Comments: Haven't checked out the site in a while. It really looks great, Joe!

Friday 08/03/2001 4:21:28pm
Name: Angie
City/Country: st. charles MO
Comments: beautiful blessing to have known

Thursday 07/19/2001 1:06:54am
Name: jayne hay
City/Country: tasmania, australia
Comments: your beautiful little treasure...what a joy she must have been thank you for sharing Ilsa's story, her photos are wonderful with love, to the memory of Ilsa

Wednesday 07/18/2001 8:04:15am
Name: dillon
City/Country: cortland ny

Wednesday 06/27/2001 7:11:01am
Name: tze ling, tan
City/Country: malaysia
Comments: i'm a medical student. i just saw a baby with SMA. i think people should give all the help they can to these babies with SMA. i love all the pictures!!!

Tuesday 05/29/2001 5:22:46pm
Name: Rhonda Long
City/Country: Largo Fla,
Comments: I too,can feel your pain i lost my baby daughter ROBEN to sma 1. born 6/25/97 passed away 1/3/97.i have never met or talked to anyone who has been through this.

Friday 05/25/2001 8:55:55pm
Name: Tracy
Homepage: http://www.our-sma-angels.com/skylar
City/Country: Wilkes Barre PA
Comments: Ilsa was a beautiful baby. My heart aches for you. Her clips brought tears to my eyes. My Skylar has SMA also. She was diagnosed at 4 months, type 1. She will be 1 on June 3rd. May Ilsa be your guardian angel now.. All my love.... Tracy

Friday 05/18/2001 11:33:43am
Name: Katie Halter
City/Country: Camden, Ohio USA
Comments: I just learned that the 5 month old daughter of a fellow teacher may have SMA. I went looking for information because I had never heard of SMA. I wish what I found was better news. My oldest son is mentally retarded with a severe seizure disorder. My heart aches for Emma and her parents, and for all those families who suffer with SMA.

Friday 05/18/2001 8:26:47am
Name: Auntie Shan and Uncle Erroll
City/Country: Edmonton, Canada
Comments: Happy birthday, Bunkin!! We miss you and love you very, very much. Auntie Shan will find some cake to eat for you!

March 20, 2001
Name Colin MacLeod
Comments Joe/Rami She is beautiful. What a wonderful tribute. God bless you all. Your friend Colin

March 3, 2001
Name Brandi Schmidt
Homepage www.our-sma-angels.com/kourtney
City St. Augustine Florida USA
Comments Hey Rami. Iwas just thinking about you guys and I came across Ilsa's site. I wonder how you are doing and how you're coping these days. I miss you and think of you, and Ilsa, often.

February 23, 2001
Name John LoTempio
City Buffalo NY

February 12, 2001
Name Theresa
City Albany California
Comments I am a student and doing research on SMA for a Biology report, and when I came here I was depressed. The site has really good information on it, but I am sorry to hear that a little girl had to die from it. She is adorable, and I am sure God is watching over her.

February 3, 2001
Name lara
Homepage http://www.asamsi.org/
City italy
Comments I have a sma........and your little angel give me a smile....thanks for your short life Ilsa. bye.........

January 2, 2001
Name Michelle
Homepage www.smaangels.com
City Olathe KS US
Comments Ilsa is such a pretty little girl. Your website looks wonderful! E-Mail me anytime you'd like to talk.

December 4, 2000
Name Jenny Stover
Homepage City Dixon IL USA
Comments I know how u feel my cousin has it and he is 11 now i am very sorry about your daughter

September 12, 2000
Name Auntie Shan
City Edmonton AB Canada
Comments Well, Bunkin, your Daddy made me cry again. But it was so great to see you again, even for just a few seconds on video. I miss you so much, I can't even believe it. Sometimes I think my heart is going to tear into pieces. I just hope that someday soon they can find a way to make sure that kids like you don't have to leave their families anymore, and I hope you've spent all your days running around, screaming at the top of your lungs up there. I said you'd probably be sitting on Owen Hart's knee, driving him nuts to make you watch Treehouse. I love you more than ever.

September 11, 2000
Name Grandma &Grandpa Hastings
City Edmonton,Ab
Comments The bunnies were running and playing in Pleasantview Saturday night just as we imagine you are in heaven, Ilsa.Your bright beautiful smile watches us from the picture on the fireplace.You gave your mom such a joyous laugh that day when grandma took your picture that we always want to remember you as you are in that picture. Love you little angel.

August 21, 2000
Name Eric And Kathryn Swanstrom
City Darien Illinois USA
Comments My wife and I extend our best wishes and will keep you in our prayers for you to find peace and comfort. We are waiting for test results for our 7 week old baby boy (our first child, Jack Evert Swanstrom. We are having some very agonizing moments, as you can understand, and are praying for strength. Thank you for the helpful information and we will always remember Ilsa in our thoughts and prayers, and will consider her one of Jack's guardian angels!!:)

August 10, 2000
Name Damien Bard
Homepage
City Boise Idaho USA
Comments Joe and Rami, Ilsa is a beautiful child. Her short life blessed you both with a wealth of valuable lessons. I wish you both the best while striving to cope with your loss. Warmest regards, Damien Bard

August 4, 2000
Name Sharon
City Daytona Beach Florida USA
Comments My grand-daughter has just been dianogsied with SMA Type2 She is 7 months old and up until now we just said she will roll over soon she will sit up soon she just isnt ready yet now we know she will never do these things its only been 2 days we are still trying to let this sink in.I have been reading all I can on this disease and trying to understand it all and what is in store for her and us at this point all i can do is cry,she is so beautiful and good. All I can ask is why ? why her? and there isnt an answer other then God has choosen her for His own reasons. Reasons I cant and wont understand but have to somehow accept. I dont know what is going to happen to her, how long will we have her with us until He calls her home but I do know that the time we do have with her is precious and the memories will be with us forever of her and the love she has shown and brought to us.

July 30, 2000
Name Jay
City Stoke-on-Trent England
Comments Little llsa sounds like a real little angel and has touched me. both my brother Daryl and me have SMA type 3 .this web page is really good from Jay aged 14

July 21, 2000
Name Mary
City West Monroe Louisiana USA
Comments I really enjoyed your page. I myself have an 8 year old daughter with SMA type 2. My heart goes out to you. God Bless You. Mary

July 8, 2000
Name John Hopkins
Homepage
City Chico CA USA
Comments Very nice site to make your daughters life even more memorable. We have a son that died in 1996 of SMA Type I, a fact even more remarkable since my wife is an RN with a MSN that worked on a Pediatric Neurological team at a university hospital, and worked with all of the area SMA cases, among others. Even after 4 years we still search for answers and more information, although we have been blessed to have two more daughters. Feel free to contact me anytime. John

July 7, 2000
Name Jennifer Kao
City Seattle WA Country USA
Comments My good friend's niece has SMA. I would like more about this. She is five now.

June 25, 2000
Name Sarah Flore
City Euless Tx U.S.A.
Comments I'm a teen living with SMA and this website was very heart - warming for me, Thank you very much

June 17, 2000
Name Peter Coombes
City Newcastle NSW Australia
Comments I am a parent of Jonathan Coombes who lived in QLD Australia from 1976 to 1992. Jonathan was diagnosed with SMA at the age of 16 months.

May 31, 2000
Name Laura
City Malverne NY USA
Comments I just recently was told that my neighbor's daughter was diagnosed with SMA, Type I. She is only 12 months old. We are all very saddened by this, how could this happen to such sweet innocent children. I read about your sweet angel and what an angel she is, a beautiful one. Our prayers go out to you and your family on your recent loss, it brought tears to my eyes and all of you will be in my prayers. This will be a foundation that we will donate to. I never new about this disease until now and I only hope we can find a cure soon, very soon. God Bless and give you the strength to carry on.

March 30, 2000
Name Elio & Hilery Brandelli
City Edmonton Alberta Canada
Comments 03/28 - Ilsa has received her angel wings and now looks over us all. May she prepare a place in heaven for us to follow and meet her later. Ilsa will always be remembered in our hearts and minds. We will remember her radiant smiles. She showed everybody around her how to accept all things with happiness and contentment. God placed her on earth to enrich all of our lives for a short time. She has taught us to realize what is truly important in life. Our thoughts and prayers are with her parents and family. May they treasure every moment that they had with this angel on earth.

March 30, 2000
Name 4 west staff
City Edmonton Ab Canada
Comments Our thoughts and prayers are with you all.Now your little angel has wings.

March 29, 2000
Name Auntie Shan
Comments Auntie Shan and Uncle Erroll love you, Bunkin. Always and forever.

February 19, 2000
Name Charlene Hannaford
City Wetaskiwin Alberta Canada
Comments Hello, You guy's have a really awesome page! IIsa is so cute! I am 18 years old and i have Spinal Muscular Atrophy Type 2. I just want to say that ever since i can remember, i have always felt like i shouldn't be here on this earth because of this aweful disease. Just tonight I started reading about it and I thank God that I am still here. I don't know a whole lot about this disease,nobody ever really talked about it. People have always told me that I am just really special and God made a goof when he made me. Well, if anybody want's to e-mail me back they are more than welcome too! charlenewasp_colin@hotmail.com Take Care and God Bless you!

February 17, 2000
Name Auntie Shan and Uncle Erroll
City Edmonton
Comments Hi, Guys now what happened with putting "the most beautiful girl in the world" on the opening, instead of the "mummer's dance" or whatever that was?? Anyway, just wanted to say hi. Give the Bunkin kisses from her Auntie.

February 16, 2000
Name Grandma and Grandpa
Comments You and your little angel are in our thoughts and prayers. May you let God carry your sorrows and store up your blessings in your own golden memory box.

February 15, 2000
Name Angela Morgan
City Plymouth MI USA
Comments I had just heard about SMA. It is so sad. I can't offer any input but all I can do is pray for her. The power of prayer is much stronger then any medicine. I will tell family and friends about your beautiful daughter and ask them to also pray for her. May God be with you in your time of need! God bless

January 24, 2000
Name stephanie Price
City Florida USA
Comments Ilsa....you are so beautiful and so precious. I love your angelic smile..Your webpage is really nice. I would love to learn more about you and your family. Do you know how special you are to be in the "movies"? I am working on my daughters webpage and came to visit you as I was looking around. Please visit my daughters site when you get a spare moment. Stephanie Price mommy to Hannah.

January 15, 2000
Name Magela Chahirian
City Montevideo MVD Uruguay
Comments Ilsa is really an angel. She is beautiful. Congratulations for this wonderful baby. My baby had SMA type I and he died in January 3rd. of this year. He lived only 16 days. He was and is an angel too.

December 16, 1999
Name Mervin Clarke
City ahiohill, enniskeane. co cork ireland
Comments best of luck with your daugther, my own daugther Rachel has sma 2 and I share your fears.

December 11, 1999
Name Anne Miller
City Rocky Mount VA
Comments Ilsa is such a beautiful child and so happy! I found out about SMA when a highschool friend's baby was diagnosed 2 years ago. Her name was Mackenzie and her mother's name is Mindy. I had lost touch with Mindy after highschool but as soon as I heard about Mackenzie's daignoses I got back into to touch with her. Since then we have rarely gove over a week with out talking. Mindy has told me that she tries to see the good things that have come out of Mackenzie's passsing and one of them is that we are now close again. Mindy is an incredible woman and I hold her close to my heart. Every year I send donation to Familes of SMA in Mackenzie's memory. I send it with the hope of God's speed that they find a cure for this terrible "theft" we call SMA. Please know that you are all in my thoughts and prayers. Sincerley, Anne Miller --

November 17, 1999
Name Jill and Carlo Brandelli
City Calgary
Comments Great job! How is Ilsa doing? Elio keeps us informed of how things are going but we haven't talked for awhile. He often talks of your great strength and dedication to her. Very tough for you I am sure. Our good friends lost ther 3 year old daughter almost a year ago after a 11/2 year horrific fight with cancer. No one ever wants to see these things happen to little children. Our prayers and thoughts are with the 3 of you.

November 16, 1999
Name Hilery and Elio Brandelli
City Edmonton Alberta Canada
Comments Ilsa is a very special person to us. We have watched her grow from the day she was born. Her smiles can light up anyone's dismal days. If we could all learn to be as happy as her, the world would be a better place ! Her parents work relentlessly making each and every day of hers special. They also work diligently to increase awareness of SMA, Please support this cause in your local area. Love and care to Ilsa and her parents. They are in our prayers daily. Love, Elio and Hilery Brandelli

November 15, 1999
Name Brandi Schmidt
City St. Augustine FL USA
Comments I LOVE the site Rami! It's really amazing. I hope Ilsa's doing better. -Brandi, mom to Kourtney, SMA1 9.5 mos. ----

November 7, 1999
Name Patty Kloster
City Breckenridge MN USA
Comments Ilsa is so pretty and I can tell from her pictures she's a real sweetie too! I love her picture show. What a good idea. My Prayers and Blessings to All of You. My Godson has Type 1, is vent dependent and will be celebrating his 2nd birthday on the 13th of November!

November 3, 1999
Name MONICA MOREY
City SHEVLIN MN USA
Comments GOOD LUCK IN THE FUTURE! I HAVE SMA 3. I AM 27 YEARS OLD, MARRIED AND TEACH SPECIAL EDUCATION AT THE HIGH SCHOOL LEVEL. ANYTHING IS POSSIBLE!

November 3, 1999
Name Kessler
Homepage
City Lausanne Switzerland
Comments Nice site, beautiful Ilsa. Take care, all of you.

November 2, 1999
Name jenn
City middleborough mass usa
Comments what a beautiful, perfect angel you have, and how lucky you are to be able to have her here with you. i wish you love and happiness with every moment with isla. what a nice job you did with her site. my angel brittany leigh has been gone for 11 mths now, and isnt it amazing how bright and happy our angels are, they cant get into much mischief, but they have wisdom and so much love in their hearts and laughter in their eyes. i wish you the best. - jenn (brit-leigh's mom)

November 2, 1999
Name Shannon Hastings (aka Auntie Shan)
City Edmonton Alberta Canada
Comments my, what a cute baby you have....she must have an auntie who loves her very much and spoils her rotten!! you think I could baby sit some time?

November 2, 1999
Name Janice Dyment
City Leduc Alberta
Comments Prayers are with you and Mom and Dad always.

November 1, 1999
Name Jackie Richardson
City Las Vegas Nevada USA
Comments Ilsa has touched more lives with her beauty and charm than most of us hope to touch in our entire lifetime. You are an inspiration, sweetheart!

November 1, 1999
Name Karen Alderdice
City Calgary Alberta Canada
Comments Ilsa has indeed taught me how precious life is and she is without a doubt a little angel. All my love to you baby.