KEEP CALLUM AT HOME, SWEET HOME

Thank you for visiting our little fundraiser that could!

 

We humbly ask, and thank you from the bottom of our hearts, that you:

1. GIVE whatever you can. No donation is too small.

2. SHARE (@callumdayinthelife) on social media with your contacts and groups.

3. FORWARD this page to your family, colleagues, friends and social media groups.

 

My name is Heidi Lindsay. I started this page to raise money for my dear friends, sweet young Callum (a.k.a. "The Sunshine Boy") and his loving parents, Leanne Scott and Dale Fuhr.

 

While Callum is thriving beyond his originally expected potential, thanks to the advocacy and dedication of his parents, he has complex special needs and he is growing beyond their ability to live at home safely for much longer. Simple tasks such as bathing, toileting and travelling have become unsafe for both Callum and his parents.

Leanne and Dale desperately wish to keep Callum out of institutional living and since government support is minuscule, at best, making Callie’s home safe lands squarely on their shoulders. The hope is that this fundraiser will help them get the equipment they desperately need.

Callum, or as he is affectionately called, “Callie”, is now 13 years old, 75 pounds and approximately 4’ 5” tall. As you can well imagine, lifting, moving him from room to room, bathing, toileting etc., things many families take for granted, are an immense daily struggle.

 

His parents now recognize that adding accessible lifts to their home is the only way they can safely care for him - now, and in the long term.

 

At this time, Callie is wheelchair-bound, non-verbal, not toilet trained and needs 24/7 direct care.

 

Callie was born with a genetic condition called Pura Syndrome , an extremely rare disease affecting fewer than 500 children in the world. There are many symptoms of Pura, but the main few that affect Callie specifically are:

• extreme low muscle tone

• severe delay in his cognitive function

• and a rare type of Epilepsy

• Callie also has extremely high joint flexibility. Combined with his low muscle tone, movement is incredibly difficult.

 

Other challenges Callie faces are:

• Medical Keto Diet to treat Epilepsy

• Scoliosis

• Autism/Sensory Processing Disorder

 

And that’s why I’ve started this fundraiser. These incredible people need help to buy specialized, accessible equipment to ensure Callie can continue to live safely at home and together they can continue enjoying all of life’s enriching activities that his able-bodied peers enjoy.

 

Callie's type of Epilepsy is called Lennox Gastaut Syndrome , an extreme form of the disease that generally doesn’t respond to pharmaceutical drugs and lasts a lifetime. Callie and his parents have fought hard and long against his Epilepsy. Thankfully they have been able to hold it at bay for over 1.5 years due to the experimental Medical Keto Diet through BC Children’s Hospital!

 

His keto diet is intense. Every ingredient that goes into Callie’s mouth is measured to a 10th of a gram!!! Miraculously, the seizures have been stopped! This diet will continue for at least a few more years, but for now, Callie is safe from seizures, which is a miracle. You can likely imagine how terrifying it is seeing your child suffering more than a dozen seizures in front of you daily and being helpless to stop them.

 

Additionally, after experiencing 15+ seizures per day for over a year, Callie has developed severe Scoliosis in his spine, which the family is still dealing with daily. The severity of his scoliosis may require multiple surgeries, but it is a ‘wait and see’ at this point. Callie also struggles with an Autism/Sensory Processing Disorder, meaning loud noises frighten him, and he’s easily overwhelmed.

 

But despite all these challenges, Callie radiates unending affection and love to everyone around him, which is how he got his nickname, “The Sunshine Boy”! Even with all that he has going against him, he is truly the happiest soul you’ll ever meet. His raw and open energy is awe-inspiring and his parents are told constantly that upon meeting Callie that you can’t help but have your life changed. And only for the better.

Callie Laughs

Callie's parents, Leanne and Dale have dedicated their lives to their son. Upon learning that Callie would likely need lifetime care and therapy, they returned to school, changed their careers and became full-time Anat Baniel NeuroMovement Practitioners.

 

They have since opened a Neurological Movement Clinic, MOVE Therapies , specializing in this revolutionary therapy. Their clinic has become a therapy destination for other neurodiverse children in Okanagan and the neighbouring provinces. This practice is also beneficial to adults, and Leanne and Dale are extremely grateful they’ve been able to turn their passion into a business that helps so many.

Thankfully, Callie is growing and turning into a BIG little boy; and on track to grow even bigger! But with his exciting growth come more difficulties with basic day-to-day movement and care.

 

Adaptations to their home and vehicle have become pressing. And they need your help.

 

When a child has complex needs, one of the biggest being that child’s inability to walk; multiple lifts, bathing equipment, reconfiguring the home and travelling with the child become extremely difficult and expensive. The high cost of accessible equipment puts it out of reach for almost everyone to afford on their own. And while limited government help is available, it’s not nearly enough.

 

It’s only through reaching out and asking for financial support through pages like this GoFundMe page that these life-changing technologies and equipment can come into their everyday lives.

 

The funds raised will be used for the following (links help illustrate the equipment required):

• House lift (1 for bedroom and 1 for bathroom)

  - Sling

  - Motor

• Accessible van

  - Adult change table, so Callum can be changed in privacy and with dignity

  - Person van lift , to help get Callum safely in and out of the vehicle

  - Wheelchair van lift , to help get Callum’s wheelchair safely in and out of the vehicle

• Bathroom (reconfiguration to include roll-in shower and roll-under vanity)

Of course, this equipment is important, but a lift-equipped van with an adult change table is critical. So, so many disabled individuals are confined to their homes because their parents or caregivers just can’t afford the equipment to take them places.

 

Being able to take Callie outside, to parks, to the beach, and even up mountains is incredibly important to his development and well-being. In fact, Leanne and Dale have been active advocates for accessible playgrounds for Callie and other physically challenged and neurodiverse kids. They have been instrumental in having Mobi mats installed at the beach and an adult change table at their local community centre.

 

Like any other parents, Leanne and Dale want the best for their son. They have been tireless advocates for him and other physically challenged and neurodiverse children, giving back to their community and prioritizing their son’s many needs above everything else in their lives. They’ve explored and exhausted every option for financial support and will continue to do so, but the reality is that they need help.

 

Thank you for taking the time to read this request. Callie’s family deeply appreciates any funds you may be able to offer at this time, and no words can accurately express their deep gratitude for your kindness and generosity!

 

Most sincerely,

Heidi (Callie, Leanne and Dale)

xo xo xo xo