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Hello Everyone,
I want to say thank you all for taking the time to visit this page. I am putting this together for my beautiful little niece Emma, who was born on August 23, 2014.
My brother Aaron and sister-in-law Ashley are both amazing parents, but circumstances are a bit different and more challenging for them at this time. Their little girl has been having infantile spasms (seizures) since birth and she is still in a battle with them to this day. Doctors have not been able to completely stop them or determine why she is having them.
Emma is now 1 year 4 months old and during this time she has only been seizure free for a total of 2 months. She has had 20 EEG tests, 1 MRI Test, 3 EKG Tests and an ECG 2 eye test.
As you could understand there is a huge responsibility when you have a child who is sick, both mentally and financially. A lot of Emma's medication and treatments are covered but not everything. Also the cost of travelling to seek treatment, special equipment, special diets, meals while away from home, hotel stays, as well as time away from work, adds up in no time. I see the struggles they have to endure and I felt as a brother, a brother-in-law, an uncle and a friend I had to help. This family still has a long journey ahead of them!
Wether we raise $50, $500 or $5000, any little bit will help. If you are able to help donate I am forever grateful, thank you from the bottom of my heart. If you are not able to donate that is totally ok, but I ask if you could still leave a message for Emma, Aaron and Ashley. Support from your friends and family goes a long way, and I know they would love to hear from everyone...:)
If you wish to read Emma's full story, please continue below.
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During Ashley's pregnancy they had many scares and complications. Emma had water around her heart, which thankfully cleared on its own with out any kind of surgery.
Emma was born August 23, 2014
After only a couple months of her being born they noticed something was not right. On October 30th, 2014 Emma was diagnosed with Infantile Spasms (seizures) at McMaster Children's Hospital in Hamilton. Doctors put her on Vigabatrin right away, and she still takes this today.
Emma since being diagnosed has had 20 EEG tests, 1 MRI Test, 3 EKG Tests and an ECG 2 eye test.
In January 2015 doctors put Emma on an oral steroid (Prednisolone) for 3 weeks to try and stop the infantile spasms. They were unsuccessful.
In May 2015 doctors put Emma on a stronger steroid, ACTH injections for 6 weeks. The results from this were very successful and Emma was seizure free for 28 days straight!!!! The unfortunate news was that the very next day they took her off the steroid she began to have the infantile spasms again.
In August they decided to try a different approach through Emma's diet. She was put onto the Ketogenic diet (High Fat Diet) and still remains on the diet to this day. Although the diet has shown improvements it has not rid her of infantile spasms. During this diet she has only went 6 days completely spasm free.
2 weeks ago in November, doctors decided to put Emma back onto the ACTH steroid injections for 6 weeks. The results were again a success and right now Emma is spasm free!!!! The doctors are going to be taking Emma off of the steroid differently this time, by weening her off slowly in an attempt to keep the success of the steroid permanent this time.
Currently Emma has stopped eating properly, something that has never been an issue for her. To make sure she still recieves her food and special diet she is getting her meals through a feeding tube until she begins to eat on her own again.
Emma also has her first visit booked for January 2016 to meet with a team of doctors at Sick Kids Hospital in Toronto, as well as another scheduled MRI.
Emma is now 1 year 4 months old and during this time she has only been seizure free for a total of 2 months. The seizures and medication has taken quite a toll on Emma and her ability to learn at the average rate of a toddler her age. She is a strong little girl and we are all praying that the doctors can soon find a reason/cure for her seizures.
I want to say thank you all for taking the time to visit this page. I am putting this together for my beautiful little niece Emma, who was born on August 23, 2014.
My brother Aaron and sister-in-law Ashley are both amazing parents, but circumstances are a bit different and more challenging for them at this time. Their little girl has been having infantile spasms (seizures) since birth and she is still in a battle with them to this day. Doctors have not been able to completely stop them or determine why she is having them.
Emma is now 1 year 4 months old and during this time she has only been seizure free for a total of 2 months. She has had 20 EEG tests, 1 MRI Test, 3 EKG Tests and an ECG 2 eye test.
As you could understand there is a huge responsibility when you have a child who is sick, both mentally and financially. A lot of Emma's medication and treatments are covered but not everything. Also the cost of travelling to seek treatment, special equipment, special diets, meals while away from home, hotel stays, as well as time away from work, adds up in no time. I see the struggles they have to endure and I felt as a brother, a brother-in-law, an uncle and a friend I had to help. This family still has a long journey ahead of them!
Wether we raise $50, $500 or $5000, any little bit will help. If you are able to help donate I am forever grateful, thank you from the bottom of my heart. If you are not able to donate that is totally ok, but I ask if you could still leave a message for Emma, Aaron and Ashley. Support from your friends and family goes a long way, and I know they would love to hear from everyone...:)
If you wish to read Emma's full story, please continue below.
---------
During Ashley's pregnancy they had many scares and complications. Emma had water around her heart, which thankfully cleared on its own with out any kind of surgery.
Emma was born August 23, 2014
After only a couple months of her being born they noticed something was not right. On October 30th, 2014 Emma was diagnosed with Infantile Spasms (seizures) at McMaster Children's Hospital in Hamilton. Doctors put her on Vigabatrin right away, and she still takes this today.
Emma since being diagnosed has had 20 EEG tests, 1 MRI Test, 3 EKG Tests and an ECG 2 eye test.
In January 2015 doctors put Emma on an oral steroid (Prednisolone) for 3 weeks to try and stop the infantile spasms. They were unsuccessful.
In May 2015 doctors put Emma on a stronger steroid, ACTH injections for 6 weeks. The results from this were very successful and Emma was seizure free for 28 days straight!!!! The unfortunate news was that the very next day they took her off the steroid she began to have the infantile spasms again.
In August they decided to try a different approach through Emma's diet. She was put onto the Ketogenic diet (High Fat Diet) and still remains on the diet to this day. Although the diet has shown improvements it has not rid her of infantile spasms. During this diet she has only went 6 days completely spasm free.
2 weeks ago in November, doctors decided to put Emma back onto the ACTH steroid injections for 6 weeks. The results were again a success and right now Emma is spasm free!!!! The doctors are going to be taking Emma off of the steroid differently this time, by weening her off slowly in an attempt to keep the success of the steroid permanent this time.
Currently Emma has stopped eating properly, something that has never been an issue for her. To make sure she still recieves her food and special diet she is getting her meals through a feeding tube until she begins to eat on her own again.
Emma also has her first visit booked for January 2016 to meet with a team of doctors at Sick Kids Hospital in Toronto, as well as another scheduled MRI.
Emma is now 1 year 4 months old and during this time she has only been seizure free for a total of 2 months. The seizures and medication has taken quite a toll on Emma and her ability to learn at the average rate of a toddler her age. She is a strong little girl and we are all praying that the doctors can soon find a reason/cure for her seizures.