Our SMA Friends

Kalair is almost 6 years old.  She has SMA Type I and lives in Olathe, KS so she is very near us.  She's our inspiration and her mom has helped us get up and running on all of the equipment and diet we are doing. www.our-sma-angels.com/Kalair  www2.caringbridge.org/ks/princesskalair

Brett is another Kansas City SMA Kiddo.  He's another inspiration.  His mommy is a big help to us too.

www.our-sma-angels.com/brett

Baby Bear Jacob is a few days older than Charlie.  He's also a Type I and lives in Canada.  He joined the other angels in Heaven on February 19, 2004.  Fly high little angel boy.

http://www.caringbridge.org/canada/babyjacob

 

Sophia is close to Charlie's age and also has SMA Type I.  She, her parents and her little sister Lila live in MN.

www.caringbridge.org/mn/darlingsophia

 

MJ is the Queen of SMA.  She's 18 years old and a "super Type I".  She is truly an incredible young lady.  MJ and her caretaker, Brenda provide so much help to us SMA newbies.  We love them both.

http://www.our-sma-angels.com/Margaret
http://www.caringbridge.com/ny/mjpurk
http://www.our-sma-angels.com/b4sma
http://www.caringbridge.org/ny/b4sma
Cole Webb was a friend from Saint Louis.  He and his mommy started Cole's Quilts - an organization that makes quilts for SMA kiddos.  Cole lost his battle with Type I last fall and our hearts still ache.  His mommy Kristin is wonderful. www.coledanielwebb.com
www.our-sma-angels.com/colesquilts
http://www3.caringbridge.org/mo/bongoboy/

We know Sierra thanks to SMA Support.  She is a beautiful little 5 year old who loves all things Disney

www.caringbridge.org/fl/sierra

www.sierrasjourney.com

 

The O'Neill's have two boys, Casey and Colin.  They are both Type I's.  They have a great new room that was built for them by Make A Wish!  We want to visit them soon :0)

www.our-sma-angels.com/oneills

Ryan is our friend from Oregon.  His mommy and I like to trade videos of our kids!  He's 9 years old and a Type II www.oursmaangels.com/ryansworld

 

Katelyn has become a friend because her grandma Annette is on chat with us.   www.oursmaangels.com/KatelynCrowder
Ian's mom recently joined chat.  She is working really hard to get Ian a power chair.   http://www.our-sma-angels.com/ian/
Madison is a beautiful 9 year old who has Type I.  Her parents set up their organization to help fight for a cure.    www.miracleformadison.org
Ava -- I jokingly call Ava Charlie's girlfriend.  She is our beautiful friend from Hawaii.  We want to go visit her some day :0) www.geocities.com/kauisbabyshower
Grace is our new friend from Austin.  She is just learning how to use BiPap and all the other NIV machine.  We wish her luck :0) www.our-sma-angels.com/grace
Skylar is a beautiful 5 year old princess.  She just went through surgery to be trached after years of being a bipap princess -- she is truly a brave strong girl. www.caringbridge.org/pa/skylar
www.our-sma-angels.com/Skylar
Malorie is another princess. She drives "Big Purple" so well.  We love watching her grow.  Her mommy and daddy just built a wonderful new house that is totally assessable for Malorie.  We want to visit! www.maloriefox.com

 

Little Ethan is our new friend.  His mommy is learning so much and doing such a great job with Ethan.  We love seeing Ethan's photos of his big eyes and beautiful smile www.caringbridge.com/visit/littlechicken

www.chickennuggetethan.piczo.com

Angel Morgan was a beautiful princess.  We loved meeting her in Virginia Beach last summer. She went to join the other SMA Angels in December (2005).  Our hearts are breaking www.our-sma-angels.com/morgan

 

 

 

 

You're Listening to:Hakuna Matata  from Disney's The Lion King