Disney Dream 4 Disabled Darling
Donation protected
Rachel's diagnosis is Subcortical Band Heterotopia (SBH) which is a cell migrational disorder. Don't know why it happened but the cells in her brain didn't migrate to where they should have. Normally cells migrate from the center of the brain to the outer part but Rachel's did not so she has thick areas in the middle of her brain that shouldn't be there and then on the outer part, if you see a photo of a brain it's got lots of ridges and grooves, Rachel's doesn't have that, it's smooth and that's where the cells were supposed to travel to. Her whole brain is affected by this structural disorder. Because of it she has severe delays, she's 17 but skill-wise somewhere between an infant and toddler level. She's non-verbal and 100% care. She has no daily living skills of her own. She also has a Cortical Visual Impairment which basically means that we don't know how her brain processes what she sees so she is registered with the Commission for the Blind.
Rachel also has the diagnosis of Lennox Gestaut Syndrome with Intractable Epilepsy, which basically is the worst it can get when it comes to seizures and one of the most unresponsive to treatments. They get in the way of her going to school, having fun, learning, eating, etc. If there were anything I could change for Rachel, I would take away her seizures. The medications are sedating with many side effects and she still continues to have seizures on the them. It breaks my heart every time Rachel has to go through one and she goes through many that have been increasing more as she gets older and have been causing deterioration of her skills. Rachel recently (April 2013) got the VNS (Vagus Nerve Stimulator) an implant placed right under the skin in her chest with a wire wrapping around her Vagus Nerve in her neck that will give off electrical impulses leading to the brain that hopefully will stop some of her seizures. As of October 2013 I'm only seeing a very slight improvement I think, it's still too soon to tell. The VNS can take up to two years to kick in and work. Rachel was on the Ketogenic Diet recently for seizure control for the second time but unfortunately it had no effect for her (the first time was in 2001 and she was seizure free and off ALL medications for 2 years!) Rachel also completed Botox shots in July in her calves followed by serial casting on both of her legs from July through late September to help Rachel get off of her toes and walk flat-footed. She completed 8 weeks in casts through the summer that seems to have brought good results.
It's not easy doing it all as a single parent, but I have nurses that come 6 days a week - Thank God for them and the support of family and great friends. Rachel is not in school due to her seizures and the difficulty of getting in and out of our apartment on a second floor with many stairs but we are on waiting lists for better housing and praying something will come in soon. Rachel gets OT, PT, & speech therapy along with home instruction for her education until things improves and she can go back to school.
With all of this, I have to say there are MANY positives to my life with Rachel. She's sweet as can be, innocent, she gets to live in this bubble world of complete love and being taken care of. She has an easy going, sweet personality. Never ever one complaint. She doesn't cry and truly is always a delight to be around. She smiles and laughs and I swear she sees angels. She loves Disney and Mickey Mouse. She enjoys lights and fireworks, wild rides and the wind in her face. Rach comes alive when the sun goes down and it cools off and the breeze kicks up. Rachel likes the water and you can't be in a pool with her and think you won't get your hair wet. She drools and slobbers on you, gives too many open mouth kisses and steals your heart. Can I have gotten any better? I can say with all sincerity that the Lord certainly picked the best of the bunch for me. One day, I know in heaven we will be complete, there she will say Mommy and I'll watch her run and jump. It will be a celebration. Now we live with struggles but she gives much happiness. I love my Rachel girl.
I would love to bring Rachel to Disney World, for there she is really a different child. I will be honest and say we have been before with Make A Wish in 2006. The magic of Disney seems to have a great effect on her - alert, vocal, no seizures - really amazing and gives her such great joy.
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ANYTHING RAISED OVER THE INITIAL GOAL AMOUNT OF 6,000 WILL GO TO A WHEELCHAIR VAN WHICH WE WILL DEFINITELY NEED AS RACHEL CONTINUES TO GROW AND SO DOES HER WHEELCHAIR.
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Thank you & God Bless, SUSANNE AND RACHEL xox
Rachel also has the diagnosis of Lennox Gestaut Syndrome with Intractable Epilepsy, which basically is the worst it can get when it comes to seizures and one of the most unresponsive to treatments. They get in the way of her going to school, having fun, learning, eating, etc. If there were anything I could change for Rachel, I would take away her seizures. The medications are sedating with many side effects and she still continues to have seizures on the them. It breaks my heart every time Rachel has to go through one and she goes through many that have been increasing more as she gets older and have been causing deterioration of her skills. Rachel recently (April 2013) got the VNS (Vagus Nerve Stimulator) an implant placed right under the skin in her chest with a wire wrapping around her Vagus Nerve in her neck that will give off electrical impulses leading to the brain that hopefully will stop some of her seizures. As of October 2013 I'm only seeing a very slight improvement I think, it's still too soon to tell. The VNS can take up to two years to kick in and work. Rachel was on the Ketogenic Diet recently for seizure control for the second time but unfortunately it had no effect for her (the first time was in 2001 and she was seizure free and off ALL medications for 2 years!) Rachel also completed Botox shots in July in her calves followed by serial casting on both of her legs from July through late September to help Rachel get off of her toes and walk flat-footed. She completed 8 weeks in casts through the summer that seems to have brought good results.
It's not easy doing it all as a single parent, but I have nurses that come 6 days a week - Thank God for them and the support of family and great friends. Rachel is not in school due to her seizures and the difficulty of getting in and out of our apartment on a second floor with many stairs but we are on waiting lists for better housing and praying something will come in soon. Rachel gets OT, PT, & speech therapy along with home instruction for her education until things improves and she can go back to school.
With all of this, I have to say there are MANY positives to my life with Rachel. She's sweet as can be, innocent, she gets to live in this bubble world of complete love and being taken care of. She has an easy going, sweet personality. Never ever one complaint. She doesn't cry and truly is always a delight to be around. She smiles and laughs and I swear she sees angels. She loves Disney and Mickey Mouse. She enjoys lights and fireworks, wild rides and the wind in her face. Rach comes alive when the sun goes down and it cools off and the breeze kicks up. Rachel likes the water and you can't be in a pool with her and think you won't get your hair wet. She drools and slobbers on you, gives too many open mouth kisses and steals your heart. Can I have gotten any better? I can say with all sincerity that the Lord certainly picked the best of the bunch for me. One day, I know in heaven we will be complete, there she will say Mommy and I'll watch her run and jump. It will be a celebration. Now we live with struggles but she gives much happiness. I love my Rachel girl.
I would love to bring Rachel to Disney World, for there she is really a different child. I will be honest and say we have been before with Make A Wish in 2006. The magic of Disney seems to have a great effect on her - alert, vocal, no seizures - really amazing and gives her such great joy.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
ANYTHING RAISED OVER THE INITIAL GOAL AMOUNT OF 6,000 WILL GO TO A WHEELCHAIR VAN WHICH WE WILL DEFINITELY NEED AS RACHEL CONTINUES TO GROW AND SO DOES HER WHEELCHAIR.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Thank you & God Bless, SUSANNE AND RACHEL xox
Organizer
Susanne Flanagan
Organizer
