Driving Miss Dylynn /Wheelchair Van
Donation protected
Please help 7 year old Dylynn and her family get a wheelchair van!!
Our journey living with Cyclin Dependant Kinase-Like 5...
What is Cyclin Dependant Kinase-Like 5 (CDKL5)?
Cyclin Dependant Kinase Like 5 (commonly referred to as CDKL5) is a rare, genetic, x-linked neuro-developmental disorder. Neurodevelopmental
disorders are impairments of the growth and
development of the brain or central nervous system
occurring during fetal development. Such impairments
unfold as an individual grows; ultimately affecting their
emotions, self control, ability to learn and memory.
This particular neurodevelopmental disorder can not be
prevented by either parent through measures or care
taken prior to or during pregnancy.
“Dylynn on her first trip at six weeks to show her off back home. We left the visit
from Ashern, Manitoba in an
ambulance to Childrens Hospital where we were
given the news that Dylynn has a very abnormal brain and is having
seizures.
Almost 4 years of non stop tests, we got the call... she
had CDKL5”.
-Shanna (mother)
Symptoms of CDKL5 begin within the first year of life
(as in Dylynn’s case) and more often occur in females. In addition to the
more common impairments associated
with a neurodevelopmental disorder, CDKL5 presents
its own list of challenges. Dylynn experiences multiple
seizures a day, she can not speak, is tube fed, follows a
ketogenic diet (a diet high in fat while very low in
carbohydrates) for seizure control. Being on such a diet entails specific meal planning, weighing her portions,
pureeing her meals and then feeding her in small
amounts by mouth. She suffers from respiratory
dysfunction (currently uses 2 inhalers and a rescue med)and has impaired sleep patterns. Dylynn can be awake
for nearly 48 hours at a time and most of her seizures
are brought on by sleep or her avoidance of it. Basically,
we are dealing with a lose/lose situation. Often a rescue med. is required to help her settle unfortunately, this is followed by a series of multiple seizures.
In addition, Dylynn is wheelchair bound.
Dylynn had her first seizure at 6 weeks of age and spent the first 4 years of her life in and out of the hospital as
staff searched for a diagnosis.
Dylynn has endured multiple tests:
* EEG’s (a test that detects electrical activity in the
brain using small, flat metal discs attached to the
scalp).
* Spinal taps (a process where by a needle is inserted in
the lower back, between two vertebrae to remove a
sample of cerebrospinal fluid — the fluid that surrounds the brain and
spinal cord to protect them from injury).
* MRI’s (a technique that uses a magnetic field and radio waves to create
detailed images of the organs and tissues within the body).
As well as:
* Gastrostomy Tube Surgery (a process where by a tube is inserted through the abdomen that delivers nutrition directly to the stomach. Also known as a G-Tube).
*AFO leg braces to correct her curving feet, which entails surgery when we are ready.
...and countless pokes for blood work in her young life.
Currently, Dylynn is taking 6 medications (not including the inhalers)
but has tried 13 different medications overthe course
of 7 years in different combinations.
Most recently Dylynn has required an Epipen due to an
adverse reaction to one of her medications. Her
physicians are still unclear on what is
causing the reaction but it has resulted in a bought of C.P.R., multiple emergency room visits and ambulance rides. Dylynn is
100% dependent on others for every aspect of her care.
Dylynn’s daily medications and supplements some needing to be
administered up to 4 times per day!
Dylynn experiencing anaphylaxis (an allergic emergency).
There is no cure for CDKL5. Due to the rarity of CDKL5 disorder, very little
is known about long term prognosis and life expectancy. It is believed that
most individuals will pass due to complications related to CDKL5 such as seizures, respiratory failure or gastrointestinal problems.
The outlook for Dylynn is grim. Her health care
providers have communicated to us from the beginning that; there is no
cure for CDKL5, her seizures will
continue throughout her lifetime and that they are
unsure of her life expectancy. They have advised us to
enjoy everyday with her... that is exactly what we have
been doing and will continue to do.
Currently, Dylynn requires several transfers and lifts
per day. Due to her age, weight and length; it is
becoming increasingly harder for me (a mother of two
additional girls ages 9 and 16) to transport Dylynn to
her nearly weekly specialist appointments. Dylynn sees
15 specialists and attends daycare and school daily as I work as an Educational Assistant. In addition we reside in a city that experiences long, harsh winters with heavy snowfall and wind chill conditions as low as -45! On any given day I drive upward of two hours with Dylynn as forfill her needs and the needs of my other girls. We also live outside the city and our vehichle is the only way to get to where we need to go. Unfortunately, relocating isn’t possible given my
situation. A wheelchair van would make transportation of Dylynn so much easier on her and myself. It would be
used to transport Dylynn in her wheelchair eliminating
the need for transfer when attending medical
appointments, daycare, school and outings. I have no
desire to defer my daughters care but realistically, as
she grows and I age... the risk of injury to myself or God
forbid Dylynn increases. She is temperature sensitive,
lacks head control and has very low muscle tone
increasing her chance of injury while being transported; as well excess movement irritates her g-tube and is
disruptive to her in general.
I don’t want to leave Dylynn out of family functions and outings nor do I want her or my other children to miss
out on social growth. Dylynn loves spending time with
her grandparents and visiting the farm. She loves foot
rubs, swinging, swimming, and cuddles and I appreciate the much needed
respite family interaction provides me socially,
emotionally, mentally and physically. Our current mode of transportation is a 2005 Pontiac Montana with over 230,000 km’s and in need of frequent repair.
Dylynn is also on the verge of outgrowing her car seat which has no coverage therefore will run me around
$1,000.00.
This is where Go Fund Me comes in...
Through my research I have discovered that a new
wheelchair van will run me approximately $50,000.00
for a basic model...far beyond my means or budget. This was a difficult step for me to take but through some
coercing from a coworker I decided to give it a try. I am
setting my goal at $50,000.00 a number I sincerely
don’t expect to meet however I want to be as
transparent as possible. I truly appreciate every cent
and every person that is able to donate.
EMAIL MONEY TRANSFERS CAN ALSO BE MADE TO DYLYNN AS WELL THROUGH CAMBRIAN CREDIT UNION
[email redacted]
On behalf of myself, Dylynn and her sisters; we
thank you in advance for your kindness, compassion
and generosity.
Our journey living with Cyclin Dependant Kinase-Like 5...
What is Cyclin Dependant Kinase-Like 5 (CDKL5)?
Cyclin Dependant Kinase Like 5 (commonly referred to as CDKL5) is a rare, genetic, x-linked neuro-developmental disorder. Neurodevelopmental
disorders are impairments of the growth and
development of the brain or central nervous system
occurring during fetal development. Such impairments
unfold as an individual grows; ultimately affecting their
emotions, self control, ability to learn and memory.
This particular neurodevelopmental disorder can not be
prevented by either parent through measures or care
taken prior to or during pregnancy.
“Dylynn on her first trip at six weeks to show her off back home. We left the visit
from Ashern, Manitoba in an
ambulance to Childrens Hospital where we were
given the news that Dylynn has a very abnormal brain and is having
seizures.
Almost 4 years of non stop tests, we got the call... she
had CDKL5”.
-Shanna (mother)
Symptoms of CDKL5 begin within the first year of life
(as in Dylynn’s case) and more often occur in females. In addition to the
more common impairments associated
with a neurodevelopmental disorder, CDKL5 presents
its own list of challenges. Dylynn experiences multiple
seizures a day, she can not speak, is tube fed, follows a
ketogenic diet (a diet high in fat while very low in
carbohydrates) for seizure control. Being on such a diet entails specific meal planning, weighing her portions,
pureeing her meals and then feeding her in small
amounts by mouth. She suffers from respiratory
dysfunction (currently uses 2 inhalers and a rescue med)and has impaired sleep patterns. Dylynn can be awake
for nearly 48 hours at a time and most of her seizures
are brought on by sleep or her avoidance of it. Basically,
we are dealing with a lose/lose situation. Often a rescue med. is required to help her settle unfortunately, this is followed by a series of multiple seizures.
In addition, Dylynn is wheelchair bound.
Dylynn had her first seizure at 6 weeks of age and spent the first 4 years of her life in and out of the hospital as
staff searched for a diagnosis.
Dylynn has endured multiple tests:
* EEG’s (a test that detects electrical activity in the
brain using small, flat metal discs attached to the
scalp).
* Spinal taps (a process where by a needle is inserted in
the lower back, between two vertebrae to remove a
sample of cerebrospinal fluid — the fluid that surrounds the brain and
spinal cord to protect them from injury).
* MRI’s (a technique that uses a magnetic field and radio waves to create
detailed images of the organs and tissues within the body).
As well as:
* Gastrostomy Tube Surgery (a process where by a tube is inserted through the abdomen that delivers nutrition directly to the stomach. Also known as a G-Tube).
*AFO leg braces to correct her curving feet, which entails surgery when we are ready.
...and countless pokes for blood work in her young life.
Currently, Dylynn is taking 6 medications (not including the inhalers)
but has tried 13 different medications overthe course
of 7 years in different combinations.
Most recently Dylynn has required an Epipen due to an
adverse reaction to one of her medications. Her
physicians are still unclear on what is
causing the reaction but it has resulted in a bought of C.P.R., multiple emergency room visits and ambulance rides. Dylynn is
100% dependent on others for every aspect of her care.
Dylynn’s daily medications and supplements some needing to be
administered up to 4 times per day!
Dylynn experiencing anaphylaxis (an allergic emergency).There is no cure for CDKL5. Due to the rarity of CDKL5 disorder, very little
is known about long term prognosis and life expectancy. It is believed that
most individuals will pass due to complications related to CDKL5 such as seizures, respiratory failure or gastrointestinal problems.
The outlook for Dylynn is grim. Her health care
providers have communicated to us from the beginning that; there is no
cure for CDKL5, her seizures will
continue throughout her lifetime and that they are
unsure of her life expectancy. They have advised us to
enjoy everyday with her... that is exactly what we have
been doing and will continue to do.
Currently, Dylynn requires several transfers and lifts
per day. Due to her age, weight and length; it is
becoming increasingly harder for me (a mother of two
additional girls ages 9 and 16) to transport Dylynn to
her nearly weekly specialist appointments. Dylynn sees
15 specialists and attends daycare and school daily as I work as an Educational Assistant. In addition we reside in a city that experiences long, harsh winters with heavy snowfall and wind chill conditions as low as -45! On any given day I drive upward of two hours with Dylynn as forfill her needs and the needs of my other girls. We also live outside the city and our vehichle is the only way to get to where we need to go. Unfortunately, relocating isn’t possible given my
situation. A wheelchair van would make transportation of Dylynn so much easier on her and myself. It would be
used to transport Dylynn in her wheelchair eliminating
the need for transfer when attending medical
appointments, daycare, school and outings. I have no
desire to defer my daughters care but realistically, as
she grows and I age... the risk of injury to myself or God
forbid Dylynn increases. She is temperature sensitive,
lacks head control and has very low muscle tone
increasing her chance of injury while being transported; as well excess movement irritates her g-tube and is
disruptive to her in general.
I don’t want to leave Dylynn out of family functions and outings nor do I want her or my other children to miss
out on social growth. Dylynn loves spending time with
her grandparents and visiting the farm. She loves foot
rubs, swinging, swimming, and cuddles and I appreciate the much needed
respite family interaction provides me socially,
emotionally, mentally and physically. Our current mode of transportation is a 2005 Pontiac Montana with over 230,000 km’s and in need of frequent repair.
Dylynn is also on the verge of outgrowing her car seat which has no coverage therefore will run me around
$1,000.00.
This is where Go Fund Me comes in...
Through my research I have discovered that a new
wheelchair van will run me approximately $50,000.00
for a basic model...far beyond my means or budget. This was a difficult step for me to take but through some
coercing from a coworker I decided to give it a try. I am
setting my goal at $50,000.00 a number I sincerely
don’t expect to meet however I want to be as
transparent as possible. I truly appreciate every cent
and every person that is able to donate.
EMAIL MONEY TRANSFERS CAN ALSO BE MADE TO DYLYNN AS WELL THROUGH CAMBRIAN CREDIT UNION
[email redacted]
On behalf of myself, Dylynn and her sisters; we
thank you in advance for your kindness, compassion
and generosity.
Organizer
Shanna Lee
Organizer
