Mikeys Chiari Journey

[mkjs88]

What an amazing child! My daughter just had her decompression March 14th 2011. She is 8 yrs old. She also has Syringomyelia, a very large syrinx in her spine caused from the Chiari It is located from C-3 to T-10 in her spine. She will have her MRI in Sept. to find out if the surgery was a success. Are you on FB? there is a support group called Our kids with Chiari... It has been helpful to me being a mom of child with this disease. My prayers are with you all! God Bless!

[mkjs88]

What an amazing child! My daughter just had her decompression. She is 8 yrs old. She also has Syringomyelia, a very large syrinx in her spine caused from the Chiari. She will have her MRI in Sept. to find out if the surgery was a success. Are you on FB? there is a support group called Our kids with Chiari... It has been helpful to me being a mom of child with this disease. My prayers are with you all! God Bless!

[mfreeny222]

My 14 year daughter is suffering with Chiari Malformation also...SHe had her first decompression surgery 11-07-2004 and she had to do occupatonal therapy to regain use of her fine motor skill properly. Her headaches improved, but they never went away and she ended up developing seizures. With medication her seizures are controlled, but her headaches keep her in the hospital all the time. Tomorrow she will have her second surgery...(12-15-2010) fighting for a cure for Chiari Malformation!!!

[nthread]

THis is so sad, this boy has been through the wringer! What a champ. I am wondering how the parents know there is something wrong to begin with, if the child is so young, they can not talk, how can you know? Thanks...best wishes.

[FlyinHyy]

crying! what a smile

[hollimagolli123]

@FlyinHyy hey He is ok for now he sees double out of his eyes because they hit his brainstem during his last surgery. so he may have to have eye surgery in 6 months. the left side of his face is also parailyzed. he has a pocket of fluid built up on his neck he seese his neroligest tomorrow. he goes to therapy twice a week. he is very happy. he has had a total of 12 surgerys

[FlyinHyy]

@hollimagolli123 oh my. so glad he has such an amazing attitude. how did neurologist appt go?

[FlyinHyy]

beautiful lil guy how is he now??

[xoDevyn73]

ugh this makes me so nervous.. my cousin has this and hes only 2 =/ good luck to you mikey!

[hollimagolli123]

@xoDevyn73 he will be ok just believe and pray

[sapphirequartet1]

How is he doing now? Cute little thing. And such brave strong parents.

[hollimagolli123]

@sapphirequartet1 mikey has had 12 surgerys and may have eye surgery due to problems during his 11th surgery. they paralized the left side of his face.and caused him to see double

[URCNFUN]

what a strong little boy! I'm in tears watching this. I have chiari malformation and a lesion on my brain stem that the drs thinnk's cancer. Gonna have my first surgery in less than 2 week and on from there with this brain stem thing.

[hollimagolli123]

@URCNFUN how are u since your surgery

[eabnjb1522]

my son is almost 5 and has chiari he has 4 surgeries thank you posting this video watching makes me feel that we are not the only ones out there going through this terrible battle....my prayers are with you and your family

[hollimagolli123]

@eabnjb1522 thankyou

[crazykidforGod]

my baby sister has chiari 3 and she is 1 of 30 some people to ever be born with it in the United States it sucks knowing that she will die shortly :(

[ChuckyIsSoCute]

i am 17,i having spasticity and stiffness cos of having arnold chiari malformtion

[Chiariwarrior]

Holli, what a precious little boy! He has truly blessed your life and those who are praying for this angel. I pray that his future is bright and full of hope. Thank you for sharing him with us. Know of my prayers and love for you and your precious family.

Mandy Fleming

[wafe0408]

my thoughts are with you all, and that precious little boy. I know the suffering that comes with chiari first hand. good luck to you all.

[vanah456]

Mikey praying for you to recover! We love you!!!

Cousin Shannon & Savanah ;)))

This baby has the heart of a lion!

[Bratstr]

I can only speak from my heart about this precious angel.I knew from the day he was born that he was an Angel and he proves it to me more and more everyday.He is the most loving child, so giving,so caring,so determined,so polite,and most of all so HAPPY.I am so blessed to have him in my life and I think this song describes him best of all, HE TRULY IS AMAZING.

[Jadedtearsofrose]

I am a friend of Patty's and she asked me to watch this. He is so strong. This had me in tears from the second it started. Thank you for posting this

Sirena