Mikey’s Dravet Syndrome Care Fund
Donation protected
Dear Family, Friends, Workmates, Classmates and Generous Supporters,
I’ve created this campaign to humbly ask for your support with my beloved nephew Mikey’s, journey with Dravet Syndrome.
Mikey is a resilient, happy, strong and inspiring young boy who loves dinosaurs, dragons, dancing, trains, laughing, good times with family and friends. Mikey attends Lawton School in SF, where he loves to learn and spend time building his skills with his supportive teachers and friendly classmates.
For those of you who don't know, Mikey was diagnosed with Dravet Syndrome in 2014. Dravet Syndrome is a rare, hard to control, catastrophic and chronic form of epilepsy that begins in the first year of a person’s life, and frequent and/or prolonged seizures continue throughout their life. It affects about 1:20,000 individuals, 80% of whom have a mutation in their SCN1A gene. Without proper medications and treatment, there is a higher risk for SUDEP (sudden unexpected death in epilepsy). Constant care is required for someone suffering from Dravet Syndrome, which can severely impact the child and their family’s quality of life.
Currently, there is no cure for Dravet Syndrome, and treatment options are limited. You can learn more about impacts on Dravet Syndrome on a child and their family at: www.dravetfoundation.org.
Mikey is currently fighting the challenges of Dravet Syndrome and we need your love, support, and donations to get through this time of uncertainty.
(Mikey and his Music Therapist, Jenny; He loves Three Little Birds from Bob Marley and the Wailers)
On February 23, 2019, Mikey experienced a traumatic, life-changing seizure after being rushed to the hospital after experiencing abdominal pain. While he was in the emergency room, this seizure lasted over an hour.
The Emergency Room doctors and nurses worked hard to find a vein to help administer life sustaining emergency medication but they found it difficult. After countless failed Intravenous (IV) attempts, 2 Intraosseous infusions (IO) that didn’t provide sufficient access and over an hour later, the medical team was able to stop Mikey’s seizure. However, Mikey was now in dangerously critical condition, but “stable” enough to move from emergency care to the Pediatric Intensive Care Unit (PICU).
What came after this emergency room experience was Mikey’s battle for his life.
When he transferred the (PICU) Mikey was able to receive 24-hour care. While there, Mikey was intubated to ensure his airways would remain open while he was in a medically induced coma, adding an extra layer of complexity to his care.
Lab results revealed his critical life-sustaining organs-- his liver and kidneys-- were injured and in a dangerously critical state. Mikey was not able to urinate, which helps process and expel the toxins and medications in his body, leaving the ER medications in his system for several weeks. Because of this and his acute kidney failure, Mikey would need to go on Continuous Renal Replacement Therapy (CRRT) or receive dialysis to help clean and filter his blood, while his kidneys took time to recover.
Mikey’s CRRT treatment was administered through a catheter in his neck to ensure consistent blood flow to a key artery. He remained on that treatment a little over 2 weeks. This treatment significantly helped him fight for his life. We were overjoyed when his kidneys started showing signs of recovery from this treatment! Mikey has since been taken off dialysis and his organs are showing signs of recovery!
While in the PICU, Mikey had dozens of X-Rays, MRIs, EKGs, EEGs, and a spinal tap to monitor his progress. Most notably, his MRI brain scan started to reveal signs of Encephalopathy (brain injury). The results showed issues in the areas that control vision and motor skills. Brain injury recovery is not similar to his organ recovery, as it could be 6 months to 2 years to show signs of recovery, so we are taking everything one hour/day at a time and always remain thankful for what progress Mikey has and continues to make.
His neurologists say it’s a marathon with brain injury recovery, so the marathon continues.
Mikey was in the PICU for over a month and has now been transferred to the Transitional Unit.
In transitional care, Mikey is currently battling (and dealing with) withdrawals from the pain medication, autonomic storming, brain injury recovery, physical therapy and occupational therapy treatments.
While it’s nothing short of a miracle that Mikey is resiliently moving through his recovery, new battles are on the horizon for Mikey and his mother, Ashley.
Mikey has not regained his independence and solely relies on Ashley and his nurses to care for him as he recovers. He has not yet been able to stand/walk independently, verbalize or eat solid food since his the Emergency Room visit on February, 23.
While this traumatic situation has displayed Mikey’s resilience, strength, and perseverance, I’d like to also ask for your support for Ashley, as she stands strong and advocates for her son’s care.
Ashley has not left Mikey’s side since he was admitted, over 47 days ago. You can only imagine the heartbreak and stress a mother experiences as she sees her only son go through this traumatic situation. But Ashley remains strong, vigilantly hopeful and full of positive vibes.
Ashley is an amazing big sister and is always there to guide and support her friends, family and lend an ear to anyone who needs it. She is passionate about photography, traveling, yoga, reggae music, Bob Marley's message and living her fullest life.
Friends, family and community, I ask for your good thoughts, wishes, prayers, and blessings, as we continue on to build our path toward Mikey’s recovery.
"Just because you are happy it does not mean that the day is perfect but that you have looked beyond its imperfections. - Bob Marley"
How You Can Support
With the funds raised in this campaign, we plan to purchase the medical equipment and supplies recommended by Mikey’s doctors, and a wheelchair accessible van for independent transport to appointments and outings. These items will be key to help Ashley and Mikey transition to his new required 24-hour care and establish their independence together.
How we will allocate your donations
Your generous donations will go directly to support and fund:
- Medical expenses and related insurance costs
- Wheelchair accessible van (used ranges from $30k-40k)
- Medical equipment for home care (including but not limited to: a night time seizure monitoring device, heart rate and blood pressure monitor, a specialized wheelchair, stand for feeding tube, pulse ox machine, learning equipment, hoist lift, shower chair, etc)
- Loss of wages due to being in the hospital (for Ashley)
- Meals and personal Items
- Purchasing crafting supplies to make small handmade gifts as a thank yous for Nurses, Doctors, Patient Care Assistants, Respiratory Therapist, Technicians, and Custodians (This has kept Ashley’s mind from idling, and brings her joy to share happy mail)
We would like to send a special thanks to ALL of Mikey’s Nurses, Doctors, Respiratory Therapists, Technicians, Patient Care Assistants and Custodians who have worked selflessly and tirelessly to help deliver the best care, guidance, and support.
If you would like to send words of encouragement, poems, ideas on how to raise awareness for Dravet Syndrome research, provide medical equipment, provide in-kind donations, sponsorships, connect us with a resource for a wheelchair accessible van, send positive vibes, donate a meal or gift cards or just say hi, we have set up a special email account that Ashley is managing. Some have asked, and you can donate to her account directly via Venmo or Zelle. Shoot her an email to confirm which works best for you.
Email Ashley directly at: [email redacted].
Given the gravity of the situation and the necessary time Mikey will need to recover from his brain injury, we plan to update this page and our social media channels more frequently keep you updated on his recovery journey.
I ask that you continue to keep Mikey, Ashley, and the hands of his nurses, doctors, and medical team in your hearts and your prayers. Good Vibes Only!
Please like, share, pay it forward and spread your positive vibes and use #MikeysSquadSquad to help get the message out.
Help us take on the challenges of Dravet Syndrome and Epilepsy together - it takes a village!
Meal Train
We’ve created a meal train sign up if you are interested in providing a meal or visiting them in the hospital -- > https://www.mealtrain.com/trains/q8ve39
If you are interested and in the Bay Area
We have created a community support team, “Mikey’s Squad Squad”, to participate in the 5k for Dravet fun run, that will take place in Golden Gate Park, SF on September 8, 2019 @ 8:30am.
Sign up here to participate → https://dravetfoundation.rallybound.org/San-Francisco-5K-for-Dravet/mikeyssquadsquad
My sincerest gratitude and thanks for your time, prayers, donations and words of encouragement and support - we appreciate all of the support from our family, friends, and community!
All my love and positive vibes,
Angelica (Mikey’s Aunt)
I’ve created this campaign to humbly ask for your support with my beloved nephew Mikey’s, journey with Dravet Syndrome.
Mikey is a resilient, happy, strong and inspiring young boy who loves dinosaurs, dragons, dancing, trains, laughing, good times with family and friends. Mikey attends Lawton School in SF, where he loves to learn and spend time building his skills with his supportive teachers and friendly classmates.
For those of you who don't know, Mikey was diagnosed with Dravet Syndrome in 2014. Dravet Syndrome is a rare, hard to control, catastrophic and chronic form of epilepsy that begins in the first year of a person’s life, and frequent and/or prolonged seizures continue throughout their life. It affects about 1:20,000 individuals, 80% of whom have a mutation in their SCN1A gene. Without proper medications and treatment, there is a higher risk for SUDEP (sudden unexpected death in epilepsy). Constant care is required for someone suffering from Dravet Syndrome, which can severely impact the child and their family’s quality of life.
Currently, there is no cure for Dravet Syndrome, and treatment options are limited. You can learn more about impacts on Dravet Syndrome on a child and their family at: www.dravetfoundation.org.
Mikey is currently fighting the challenges of Dravet Syndrome and we need your love, support, and donations to get through this time of uncertainty.
(Mikey and his Music Therapist, Jenny; He loves Three Little Birds from Bob Marley and the Wailers)On February 23, 2019, Mikey experienced a traumatic, life-changing seizure after being rushed to the hospital after experiencing abdominal pain. While he was in the emergency room, this seizure lasted over an hour.
The Emergency Room doctors and nurses worked hard to find a vein to help administer life sustaining emergency medication but they found it difficult. After countless failed Intravenous (IV) attempts, 2 Intraosseous infusions (IO) that didn’t provide sufficient access and over an hour later, the medical team was able to stop Mikey’s seizure. However, Mikey was now in dangerously critical condition, but “stable” enough to move from emergency care to the Pediatric Intensive Care Unit (PICU).
What came after this emergency room experience was Mikey’s battle for his life.
When he transferred the (PICU) Mikey was able to receive 24-hour care. While there, Mikey was intubated to ensure his airways would remain open while he was in a medically induced coma, adding an extra layer of complexity to his care.
Lab results revealed his critical life-sustaining organs-- his liver and kidneys-- were injured and in a dangerously critical state. Mikey was not able to urinate, which helps process and expel the toxins and medications in his body, leaving the ER medications in his system for several weeks. Because of this and his acute kidney failure, Mikey would need to go on Continuous Renal Replacement Therapy (CRRT) or receive dialysis to help clean and filter his blood, while his kidneys took time to recover.
Mikey’s CRRT treatment was administered through a catheter in his neck to ensure consistent blood flow to a key artery. He remained on that treatment a little over 2 weeks. This treatment significantly helped him fight for his life. We were overjoyed when his kidneys started showing signs of recovery from this treatment! Mikey has since been taken off dialysis and his organs are showing signs of recovery!
While in the PICU, Mikey had dozens of X-Rays, MRIs, EKGs, EEGs, and a spinal tap to monitor his progress. Most notably, his MRI brain scan started to reveal signs of Encephalopathy (brain injury). The results showed issues in the areas that control vision and motor skills. Brain injury recovery is not similar to his organ recovery, as it could be 6 months to 2 years to show signs of recovery, so we are taking everything one hour/day at a time and always remain thankful for what progress Mikey has and continues to make.
His neurologists say it’s a marathon with brain injury recovery, so the marathon continues.
Mikey was in the PICU for over a month and has now been transferred to the Transitional Unit.
In transitional care, Mikey is currently battling (and dealing with) withdrawals from the pain medication, autonomic storming, brain injury recovery, physical therapy and occupational therapy treatments.
While it’s nothing short of a miracle that Mikey is resiliently moving through his recovery, new battles are on the horizon for Mikey and his mother, Ashley.
Mikey has not regained his independence and solely relies on Ashley and his nurses to care for him as he recovers. He has not yet been able to stand/walk independently, verbalize or eat solid food since his the Emergency Room visit on February, 23.
While this traumatic situation has displayed Mikey’s resilience, strength, and perseverance, I’d like to also ask for your support for Ashley, as she stands strong and advocates for her son’s care.
Ashley has not left Mikey’s side since he was admitted, over 47 days ago. You can only imagine the heartbreak and stress a mother experiences as she sees her only son go through this traumatic situation. But Ashley remains strong, vigilantly hopeful and full of positive vibes.
Ashley is an amazing big sister and is always there to guide and support her friends, family and lend an ear to anyone who needs it. She is passionate about photography, traveling, yoga, reggae music, Bob Marley's message and living her fullest life.
Friends, family and community, I ask for your good thoughts, wishes, prayers, and blessings, as we continue on to build our path toward Mikey’s recovery.
"Just because you are happy it does not mean that the day is perfect but that you have looked beyond its imperfections. - Bob Marley"
How You Can Support
With the funds raised in this campaign, we plan to purchase the medical equipment and supplies recommended by Mikey’s doctors, and a wheelchair accessible van for independent transport to appointments and outings. These items will be key to help Ashley and Mikey transition to his new required 24-hour care and establish their independence together.
How we will allocate your donations
Your generous donations will go directly to support and fund:
- Medical expenses and related insurance costs
- Wheelchair accessible van (used ranges from $30k-40k)
- Medical equipment for home care (including but not limited to: a night time seizure monitoring device, heart rate and blood pressure monitor, a specialized wheelchair, stand for feeding tube, pulse ox machine, learning equipment, hoist lift, shower chair, etc)
- Loss of wages due to being in the hospital (for Ashley)
- Meals and personal Items
- Purchasing crafting supplies to make small handmade gifts as a thank yous for Nurses, Doctors, Patient Care Assistants, Respiratory Therapist, Technicians, and Custodians (This has kept Ashley’s mind from idling, and brings her joy to share happy mail)
We would like to send a special thanks to ALL of Mikey’s Nurses, Doctors, Respiratory Therapists, Technicians, Patient Care Assistants and Custodians who have worked selflessly and tirelessly to help deliver the best care, guidance, and support.
If you would like to send words of encouragement, poems, ideas on how to raise awareness for Dravet Syndrome research, provide medical equipment, provide in-kind donations, sponsorships, connect us with a resource for a wheelchair accessible van, send positive vibes, donate a meal or gift cards or just say hi, we have set up a special email account that Ashley is managing. Some have asked, and you can donate to her account directly via Venmo or Zelle. Shoot her an email to confirm which works best for you.
Email Ashley directly at: [email redacted].
Given the gravity of the situation and the necessary time Mikey will need to recover from his brain injury, we plan to update this page and our social media channels more frequently keep you updated on his recovery journey.
I ask that you continue to keep Mikey, Ashley, and the hands of his nurses, doctors, and medical team in your hearts and your prayers. Good Vibes Only!
Please like, share, pay it forward and spread your positive vibes and use #MikeysSquadSquad to help get the message out.
Help us take on the challenges of Dravet Syndrome and Epilepsy together - it takes a village!
Meal Train
We’ve created a meal train sign up if you are interested in providing a meal or visiting them in the hospital -- > https://www.mealtrain.com/trains/q8ve39
If you are interested and in the Bay Area
We have created a community support team, “Mikey’s Squad Squad”, to participate in the 5k for Dravet fun run, that will take place in Golden Gate Park, SF on September 8, 2019 @ 8:30am.
Sign up here to participate → https://dravetfoundation.rallybound.org/San-Francisco-5K-for-Dravet/mikeyssquadsquad
My sincerest gratitude and thanks for your time, prayers, donations and words of encouragement and support - we appreciate all of the support from our family, friends, and community!
All my love and positive vibes, Angelica (Mikey’s Aunt)
Fundraising team: Mikey's Squad Squad (5)
Angelica Benjamin
Organizer
San Francisco, CA
Ashley Walker- Benjamin
Beneficiary
Cathy Benjamin
Team member
Danielle Pyle
Team member
Jamie Richardson
Team member