I have something very special to share with you today.
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| Isn't she a cutie? |
Little Lamb has given me the
spotlight today. She is a very kind and
compassionate person and has extended her heart to help us raise money for
research into safe and effective treatment options for a disabling condition
that many people know very little about – Narcolepsy.
Can you imagine how you’d feel
after 30 hours without sleep? And
virtually nothing, not even sleeping, would make that sleepiness ever go
away? That is what it feels like to have
Narcolepsy!
Narcolepsy is near and dear to my
heart because my 6 year old daughter, Makenna, suffers from a severe form of
childhood narcolepsy. She was diagnosed
13 months ago after a bout of pneumonia.
Prior to that she was a perfectly normal and healthy child.
Narcolepsy is a neurological sleep disorder. It is believed to be an auto-immune disease
where the body’s immune system attacks a small part of the brain that controls
sleep/wake cycles. It is typically triggered
by a viral or bacterial infection, stress or the hormonal changes of puberty.
People with narcolepsy spend most of their sleep time in REM
sleep (which is the sleep phase in which we dream) and do not get enough deep
restorative sleep. As a result, no
amount of sleep is restorative enough to prevent frequent periods of daytime
sleepiness.
Narcolepsy symptoms can range from mild to severe. Narcolepsy is highly underdiagnosed and the
majority of mild cases never get diagnosed.
It is believed the incidence of narcolepsy is 1:2000 people worldwide.
Severe narcolepsy can be devastating and disabling. It is truly an invisible disability because
people with narcolepsy “look” normal, but are struggling to cope with the
everyday activities of life. Treatment
options exist, but typical medications for narcolepsy are often not well tolerated. Some medications, when used long-term, can
cause significant cardiac damage. There
are no safe and effective treatment options approved for children with
narcolepsy. Currently, there is no cure
for narcolepsy.
Symptoms of narcolepsy are:
-
Excessive daytime sleepiness requiring 1-4 naps
per day.
-
Cataplexy (sudden loss of muscle tone resulting in
weakness ranging from buckling knees and head drops to complete paralytic
collapse)
-
Sleep Paralysis (being unable to move when waking
up)
-
Frightening hallucinations when falling asleep or
waking up
-
Disrupted nighttime sleep similar to insomnia
People with narcolepsy need others to understand that their
need for daytime naps is a true medical need.
They are not lazy. They are not
depressed. They are not
unmotivated. They are simply tired, and
they need for people to learn more about this condition. They need us to spread the true facts about
narcolepsy.
They also need research dollars. A small
research team at Stanford University School of Medicine, under the supervision
of Dr. E. Mignot, works tirelessly to find treatments and perhaps someday, a cure for this debilitating condition.
They need our help. As a family
personally affected by narcolepsy, we have organized a 5 km Wake-Up Walk for
Narcolepsy Research. Every dollar raised
on this WALK for Narcolepsy will be donated directly to the Center for
Narcolepsy at Stanford, and will be used solely for Narcolepsy Research.
Please consider making a donation towards this needy cause, in
honour of the lifelong struggle my daughter faces. Every dollar raised is a dollar closer to a
safe and effective treatment or cure.
Please email me at Taylenne@yahoo.ca
to receive our paypal information for donation purposes, or alternatively, if
you’d rather donate directly, please send a cheque made out to Stanford
University, with a letter requesting that your donation be used for
narcolepsy research. Mail your
donation to:
Gift Processing
Sleep Center Administration
1050 Arastradero Road
Bldg. A 2nd Fl. Ste. A248
Palo Alto, CA 94304
Sleep Center Administration
1050 Arastradero Road
Bldg. A 2nd Fl. Ste. A248
Palo Alto, CA 94304
Thank you for considering our cause for your next charitable
donation.
And a special thank you to Little Lamb for opening up her blog
to a cause that means the world to us and to our little girl.
If this has touched your heart and you would like to donate a little or lot, it would be great appreciated!!! As we all know from some other fundraising efforts in our blogging community every little bit adds up and makes a big difference. If you would feel more comfortable sending a donation through me, I can do that as well. Just email me at canadianbunny@gmail.com and we can make it happen. Thanks so much to Makky's Mom for sharing her story and for being such a great advocate for her daughter and this disorder.
