Pup for Marissa
Donation protected
4/1/20::: Update from the Cavazos Family:
Hello everyone,
We wanted to give an update. First of all, thank you so much to all of you for supporting Marissa’s first dog. We are making a poster out of your names for the wall in her room. We will never forget you.
We are very close to our goal -- $22,829!
Marissa had a rough week last week that ended with an emergency appointment to the Children’s Hospital where they once again increased all her meds and her VNS output. They are applying for insurance approval of another new medicine to help stop or at least slow down the seizures, which are still daily.
Today, April Fool’s Day, she pranked her dad by adding black food coloring to his toothpaste. It was hilarious. However, she had a seizure after the prank, and has no memory of it now. I wish I had taken a video of it. This is her life. Events happen and some she loses because of the seizures.
Because of COVID19 the seizure response dog camp has been moved from early June to late July. We are saddened by this, but of course we do understand completely. Hope deferred makes a heart sick, but we know the longing will be fulfilled.
God Bless ALL of you! And stay safe.
Much love,
The Cavazos Family
An UPDATE from the Cavazos Family:
How will having a seizure-response service dog help Marissa?
A seizure-response service dog will become Marissa’s constant companion. This morning when I dropped her off at school, she didn’t want to stay. She had a 4 minute seizure and was having myoclonic jerks every 2-3 minutes and she was scared another big seizure was coming. I hate leaving her on these mornings and hate that her health care is tied to my job. Breathe, in my mind, though I am now thinking, her dog will be there to comfort her when we cannot be there. Yes, she has great teachers and support staff at her school, but it is not the same for her. But a seizure-response service dog can and will become her best friend. It will make these scary mornings easier for her.
A seizure-response service dog will allow her to participate more freely in activities at school. Currently, a different student is next to her throughout the day to advise the teacher(s) if Marissa is having a seizure. A seizure-response service dog would take away this responsibility from her friends and give Marissa more independence. Sometimes, students can be bossy toward her because of this awkward relationship.
Lastly, and most importantly, a seizure-response service dog will help us all to sleep better. I wake up throughout the night and most nights try to stay awake during the early morning hours just in case. During the night I wake up and panic. “How long have I been asleep? Is she still breathing? Did she have a seizure that I missed?” Or when I wake up to a seizure, “Did it just start? What time is it? Turn on the light. Where is her arm so I can roll her onto her side.” A seizure-response service dog will take some of this struggle away.
On December 29th, 2019, at 12:30 am Marissa started seizing it ended and started again, ended and started again. This cycle did not stop. She was admitted into ER at Valley Children’s Hospital at 2:11 am where she stayed until 8:30 the next morning. Because when she seizes it is not loud, and she does not convulse very much had she been sleeping alone the night may have had a different outcome. I know she is not always going to want me sleeping next to her….
Thank you so much for your support,
Much love and appreciation,
The Cavazos Family
PS: We are blogging her journey at Newhopeformarissa.com
A thank you from Marissa's mom,
There are very few things in life that can humble you as much as watching your former students, friends, family and people you don’t even know give of themselves to help your child. We are overwhelmed with gratitude, to put into words the love we feel is not possible. The good of the world is more powerful than the evil, and epilepsy has helped us to know this first hand. I am a firm believer that everything happens for a reason, even when what is happening is gut wrenching hard. We are deeply moved by the compassion Marissa is receiving as she journeys through this tough time. From the bottom of our hearts, thank you and God Bless.
Marissa is a spunky 9 year old with a rare disorder called Subcortical Band Heterotopia. This condition develops in the fetal brain during early development. Basically it means that the nerve cells did not move to their correct location in the brain. This results in 18 different types of seizures. Marissa has had surgeries, interventions, and uses a magnetic heart starter; however there is no cure. Marissa also has Celiac disease and premature adrenarche in addition to Subcortical Band Hetertopia.
Marissa has to have a full time aide at school and cannot even sleep in a room alone. This Go Fund Me account is to help the family pay for a seizure support dog that helps detect when a seizure is coming and can keep Marissa safe from further injury.
Marissa was adopted at birth into a loving home. Their love and care for Marissa is their top priority. The family is finally off the wait-list for the dog, and their pup is being trained to start in June; however, the expense is more than they can afford.
Marissa is a sweet, tender-hearted young lady with multiple genetic disorders. She was diagnosed with celiac disease at the age of four (4) ; then premature adrenarche after having extreme body odor at the age of five (5); and with Subcortical Band Heterotopia on August 1st, 2017 at the age of seven (7) . Marissa her first unconscious seizure lasting about five (5) minutes on July 27, 2017.
Marissa suffers from four main types of seizures and since July 2017 these seizures are uncontrolled and interfere with every aspect of her life and our family life. Our meal times are regularly interrupted by myoclonic jerks that send Marissa’s head into her bowl of cereal or plate of dinner. She has fallen off her chair at school during tonic clonic seizures. Marissa often walks around unaware of her surroundings and possible dangers during a partial complex seizure. Conversations with Marissa are often interrupted by absence seizures. Absence seizures also regularly interrupt educational instructional time, childhood play, and church activities.
Because of the severity and frequency of Marissa’s seizures, we track every single seizure every day. Marissa’s seizures keep her in constant physical danger, interfere with her ability to learn, prevent her from engaging in normal childhood activities, and without intense supervision and treatment cause additional medical problems and injuries. The simple act of playing with other children on a playground can trigger a seizure that can cause severe injuries. Unless you witness it, you cannot imagine how difficult Marissa’s life is with this many seizures. This sweet child, who is able to read, write, calculate, and think for herself is tormented throughout every moment of every day by seizures.
This medically trained seizure dog is crucial in keeping Marissa safe from daily tasks that she currently faces. Any little bit contributed will help keep Marissa safe. Please join me in supporting this deserving family.
Hello everyone,
We wanted to give an update. First of all, thank you so much to all of you for supporting Marissa’s first dog. We are making a poster out of your names for the wall in her room. We will never forget you.
We are very close to our goal -- $22,829!
Marissa had a rough week last week that ended with an emergency appointment to the Children’s Hospital where they once again increased all her meds and her VNS output. They are applying for insurance approval of another new medicine to help stop or at least slow down the seizures, which are still daily.
Today, April Fool’s Day, she pranked her dad by adding black food coloring to his toothpaste. It was hilarious. However, she had a seizure after the prank, and has no memory of it now. I wish I had taken a video of it. This is her life. Events happen and some she loses because of the seizures.
Because of COVID19 the seizure response dog camp has been moved from early June to late July. We are saddened by this, but of course we do understand completely. Hope deferred makes a heart sick, but we know the longing will be fulfilled.
God Bless ALL of you! And stay safe.
Much love,
The Cavazos Family
An UPDATE from the Cavazos Family:
How will having a seizure-response service dog help Marissa?
A seizure-response service dog will become Marissa’s constant companion. This morning when I dropped her off at school, she didn’t want to stay. She had a 4 minute seizure and was having myoclonic jerks every 2-3 minutes and she was scared another big seizure was coming. I hate leaving her on these mornings and hate that her health care is tied to my job. Breathe, in my mind, though I am now thinking, her dog will be there to comfort her when we cannot be there. Yes, she has great teachers and support staff at her school, but it is not the same for her. But a seizure-response service dog can and will become her best friend. It will make these scary mornings easier for her.
A seizure-response service dog will allow her to participate more freely in activities at school. Currently, a different student is next to her throughout the day to advise the teacher(s) if Marissa is having a seizure. A seizure-response service dog would take away this responsibility from her friends and give Marissa more independence. Sometimes, students can be bossy toward her because of this awkward relationship.
Lastly, and most importantly, a seizure-response service dog will help us all to sleep better. I wake up throughout the night and most nights try to stay awake during the early morning hours just in case. During the night I wake up and panic. “How long have I been asleep? Is she still breathing? Did she have a seizure that I missed?” Or when I wake up to a seizure, “Did it just start? What time is it? Turn on the light. Where is her arm so I can roll her onto her side.” A seizure-response service dog will take some of this struggle away.
On December 29th, 2019, at 12:30 am Marissa started seizing it ended and started again, ended and started again. This cycle did not stop. She was admitted into ER at Valley Children’s Hospital at 2:11 am where she stayed until 8:30 the next morning. Because when she seizes it is not loud, and she does not convulse very much had she been sleeping alone the night may have had a different outcome. I know she is not always going to want me sleeping next to her….
Thank you so much for your support,
Much love and appreciation,
The Cavazos Family
PS: We are blogging her journey at Newhopeformarissa.com
A thank you from Marissa's mom,
There are very few things in life that can humble you as much as watching your former students, friends, family and people you don’t even know give of themselves to help your child. We are overwhelmed with gratitude, to put into words the love we feel is not possible. The good of the world is more powerful than the evil, and epilepsy has helped us to know this first hand. I am a firm believer that everything happens for a reason, even when what is happening is gut wrenching hard. We are deeply moved by the compassion Marissa is receiving as she journeys through this tough time. From the bottom of our hearts, thank you and God Bless.
Marissa is a spunky 9 year old with a rare disorder called Subcortical Band Heterotopia. This condition develops in the fetal brain during early development. Basically it means that the nerve cells did not move to their correct location in the brain. This results in 18 different types of seizures. Marissa has had surgeries, interventions, and uses a magnetic heart starter; however there is no cure. Marissa also has Celiac disease and premature adrenarche in addition to Subcortical Band Hetertopia. Marissa has to have a full time aide at school and cannot even sleep in a room alone. This Go Fund Me account is to help the family pay for a seizure support dog that helps detect when a seizure is coming and can keep Marissa safe from further injury.
Marissa was adopted at birth into a loving home. Their love and care for Marissa is their top priority. The family is finally off the wait-list for the dog, and their pup is being trained to start in June; however, the expense is more than they can afford.
Marissa is a sweet, tender-hearted young lady with multiple genetic disorders. She was diagnosed with celiac disease at the age of four (4) ; then premature adrenarche after having extreme body odor at the age of five (5); and with Subcortical Band Heterotopia on August 1st, 2017 at the age of seven (7) . Marissa her first unconscious seizure lasting about five (5) minutes on July 27, 2017.
Marissa suffers from four main types of seizures and since July 2017 these seizures are uncontrolled and interfere with every aspect of her life and our family life. Our meal times are regularly interrupted by myoclonic jerks that send Marissa’s head into her bowl of cereal or plate of dinner. She has fallen off her chair at school during tonic clonic seizures. Marissa often walks around unaware of her surroundings and possible dangers during a partial complex seizure. Conversations with Marissa are often interrupted by absence seizures. Absence seizures also regularly interrupt educational instructional time, childhood play, and church activities.
Because of the severity and frequency of Marissa’s seizures, we track every single seizure every day. Marissa’s seizures keep her in constant physical danger, interfere with her ability to learn, prevent her from engaging in normal childhood activities, and without intense supervision and treatment cause additional medical problems and injuries. The simple act of playing with other children on a playground can trigger a seizure that can cause severe injuries. Unless you witness it, you cannot imagine how difficult Marissa’s life is with this many seizures. This sweet child, who is able to read, write, calculate, and think for herself is tormented throughout every moment of every day by seizures.
This medically trained seizure dog is crucial in keeping Marissa safe from daily tasks that she currently faces. Any little bit contributed will help keep Marissa safe. Please join me in supporting this deserving family.
Organizer and beneficiary
Kierstin Cabalka Webb
Organizer
Bakersfield, CA
Jeaninne Cavazos
Beneficiary
