Miracles for Mila - Dravet Warrior

Lindsey Kovacevic is organizing this fundraiser on behalf of Kris Kovacevic.

Donation protected

Kristina and John (JJ) Duke welcomed their first child, Milana (Mila), in February of 2018. Just 6 months into their parenting journey their world was turned upside down as Mila started experiencing seizures. In November of 2018, Mila was diagnosed with a rare and devastating form of epilepsy called Dravet syndrome. It is caused by a genetic mutation and there is no cure. Current treatment options are limited and Dravet does not respond to medication like other forms of epilepsy often do.

Looking at her, you'd notice her stunning blue eyes, curly and long hair, contagious smile, and her social nature. If you watched her for a while you'd notice that she's advanced for her age. She's FULL of spunk and keeps her parents on their toes. She doesn't slow down for anyone or anything, except when a seizure hits. Looking at her, you'd never know what she is likely going to face in her life.

Dravet begins in the first year of life and, while development usually continues as expected for this period, by the second or third year of life developmental delays begin to appear. Constant watch and care is required as seizures must be acted up on quickly, and the quality of life for the person with Dravet as well as the family is severely impacted. Most people with Dravet syndrome remain dependent on caregivers for life. Issues associated with Dravet syndrome include:

- Prolonged seizures
- Frequent seizures
- Behavioral and developmental delays
- Movement and balance issues
- Orthopedic conditions
- Delayed language and speech issues
- Growth and nutrition issues
- Sleeping difficulties
- Chronic infections
- Sensory integration disorders
- Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues
- a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy),
(taken from: https://www.dravetfoundation.org)

Mila has a great medical team behind her here in Vancouver, BC, but the long-term outcome is uncertain. Kristina was not able to return to work following her maternity leave as there is no appropriate childcare available for Mila. JJ quit his union job and started his own business to give him the flexibility to be with his family as much as possible and when needed. Even with the help of family, the care Kristina and JJ need to provide to Mila is emotionally and financially draining.

Eyes need to be on Mila 24/7 as a catastrophic seizure can hit at any time and rescue medications need to be administered within a specific time frame. Prolonged seizures (over 5 minutes long) that do not respond to the medication can lead to life-threatening complications. Mila has had seizures that last from 5 minutes to 2 hours long. They do not always respond to the medications. This has led to multiple 911 calls, ambulance visits, and some hospital stays.

The seizures are unpredictable and can be brought on by a number of things including: excitement, bright light (like the sun), a change in temperature, a virus, or not enough sleep. (Anyone who has been around young children will appreciate how hard it would be to keep a one-year-old calm, rested, out of the sun, and away from anyone who is sick or was recently sick or was recently around someone who was sick). In March of 2019, Mila ended up in an induced coma after a two hour long seizure that was brought on by a common cold. Kris and JJ do their best to live in the moment because they really do not know what the next moment might bring.

A trained seizure dog would help to improve the quality of life for this family in addition to keeping Mila more safe. These dogs can alert people to when a seizure is happening, prevent further injuries during seizures, help children work through behavioral issues that may come with Dravet, and, in some cases, even predict when a seizure is about to happen. The Dukes have identified an organization that has no minimum age requirement, meaning Mila could get a dog as soon as one was available. The wait time for these dogs can be up to two years, and a large deposit ($17, 000 US) must be made in order to even be put on the wait list. We need to get Mila on that wait list as soon as possible. Helping the Dukes to get a service dog for Mila is a gift that will keep on giving. It will also allow Kristina and JJ some peace of mind, especially when Mila is sleeping (and hopefully enable them to get a bit more sleep as well).

This Go Fund Me has been set up to support the family in the following ways:

- help with the cost of the deposit for a trained seizure dog
- help to cover some of the out-of-pocket medical costs Kristina and JJ are having to pay (on a greatly reduced income as Kristina is unable to work)
- contribute to funding initiatives for Dravet research, as better treatments desperately need to be found in order to improve the quality of life for those with Dravet and their families

Please consider donating any amount and share this campaign widely.

For more about Mila's story and Dravet syndrome, you can follow Kristina on Instagram: https://www.instagram.com/shiftandshine/

#MiraclesforMila