Presley's Fundraising


Tuesday, March 16, 2010

Fundraising for our Presley


We are the proud parents of Presley. Presley is 6.5 years old and was born with Cerebral Palsy. The type of cerebral palsy that Presley was diagnosed with is Spastic Diplegia. Spastic diplegia is a form of cerebral palsy where both the arms and legs have abnormal stiffness. The legs are often more affected than the upper extremities.Spastic diplegia means stiff or contracted muscles affecting two extremities causing weakness.

For those who are not familiar with Cerebral Palsy below is some information for you.

Cerebral Palsy (CP) is a term used to describe a group of disorders affecting body movement and muscle co-ordination. The medical definition of cerebral palsy is a "non-progressive" but not unchanging disorder of movement and/or posture, due to an insult to or anomaly of the developing brain. Development of the brain starts in early pregnancy and continues until about age three. Damage to the brain during this time may result in cerebral palsy.

This damage interferes with messages from the brain to the body, and from the body to the brain. The effects of cerebral palsy vary widely from individual to individual. At its mildest, cerebral palsy may result in a slight awkwardness of movement or hand control. At its most severe, CP may result in virtually no muscle control, profoundly affecting movement and speech. Depending on which areas of the brain have been damaged, one or more of the following may occur:

(1) muscle tightness or spasms
(2) involuntary movement
(3) difficulty with "gross motor skills" such as walking or running
(4) difficulty with "fine motor skills" such as writing or doing up buttons
(5) difficulty in perception and sensation

These effects may cause associated problems such as difficulties in feeding, poor bladder and bowel control, breathing problems, and pressure sores. The brain damage which caused cerebral palsy may also lead to other conditions such as: seizures, learning disabilities or developmental delay. It is important to remember that limbs affected by cerebral palsy are not paralysed and can feel pain, heat, cold and pressure. It is also important to remember that the degree of physical disability experienced by a person with cerebral palsy is not an indication of his/her level of intelligence.

Cerebral palsy is not a progressive condition - damage to the brain is a one-time event so it will not get worse - and people with cerebral palsy have a normal life-span. Although the condition is not progressive, the effects of CP may change over time. Some may improve: for example, a child whose hands are affected may be able to gain enough hand control to write and to dress him/herself. Others may get worse: tight muscles can cause problems in the hips and spine of growing children which require orthopaedic surgery; the aging process can be harder on bodies with abnormal posture or which have had little exercise.

We have heard recently of a promising therapy that is not funded by medicare in our province or Canada and is not covered by Private Insurance. We visited the Island Hyperbaric Therapy center that is thankfully located close to where we live. We spent 3 hours there and visited the chamber and heard many promising stories of how many children who had undergone hyperbaric oxygen therapy had greatly improved.

How does hyperbaric oxygen help a child with cerebral palsy (CP) or traumatic brain injury (TBI)?

In CP and TBI patients, some of the injured brain tissues may be "dormant" and non-functioning. HBOT can stimulate these "dormant" tissues and return them to more normal function. In young children, gross motor function, fine motor function, cognitive processing and spasticity can be improved.

Hyperbaric oxygen therapy, used in conjunction with other therapies, ensures the best recovery possible for children with cerebral palsy and traumatic brain injury. In a 2007 article by Dr. Pierre Marois, MD, pediatric physiatrist from Ste Justin’s Hospital Montreal, Dr. Marois compared the effectiveness of Hyperbaric Oxygen against other therapeutic inventions for CP and found HBOT to be significantly more effective in providing quality of life changes in patients with cerebral palsy.

In the testing that has been done, some children show improvement of up to 500% in different areas: cognitively, fine motor and gross motor.

Many of the children tested had CP like our Presley. It is suggested to start with 40 sessions of 1.5 hours per day (5 days a week) for 2 months. Of course this is costly, time consuming and is about $130 a day totalling $5200.00 for the 40 sessions BUT it could make a difference to Presley and that is our goal. What parent can deny trying everything possible to help their child. I know I don't want to.

If you would like to read more about the Therapy Center please click on the link to the right or click here:

With six children(Presley is our baby) we sadly don't have the money available to be able to fund the therapy that could hopefully help and improve the quality of Presley's life. We can afford some of the cost but not the total amount that is required.

Presley has undergone hours of physio therapy and occupational therapy to help her. She has undergone 3 rounds of botox injections into the muscle in her affected leg which does help with the spasticity but it lasts about 3 months. With botox comes weeks of casts in the hope of getting maximum stretch of her muscle in her leg to reduce the amount of toe walking. Presley wears an AFO (Brace)on her leg every day from 7am until 7pm. She has been such a trooper through all of these medical visits. We are so proud of you Presley!

Check out the fundraising ideas we have on the right hand side of this blog.

If you would like to make a donation to help us to make this possible for Presley, please send a cheque or you can make a donation via paypal if you would like. Just click on the "Donate" button on the upper right side of the blog.

You can email us at: if you would like more information.

Thank you very much,
Karen and James
aka Mom and Dad