Help Bobby-Jo raise money

Hope for Harley ♥️

In December 2022, after four long months of doctor’s appointments, seeing different specialists, testing and bloodwork, our sweet Harley was diagnosed with polyarticular juvenile idiopathic arthritis, with 34 affected joints. She was just a few weeks shy of turning 2.5 years old.

This diagnosis came after several months of watching our daughter’s mobility decline from minor “limping”, to ganglion cysts appearing on both her wrists and her ankles, to not being able to lift her shoulders to put a shirt on, and not being strong enough to use her own arms to raise her body up from laying in bed, to her knees doubling in size and walking becoming more and more challenging, to the point where Colin & I had to carry her around because it hurt too much to walk. She also was experiencing inflammation in her eyes, causing her extreme light sensitivity and pain.

She could no longer run, jump and play like a typical toddler. She was very cautious and did a lot more “sitting and watching” than actual playing. 

It was on VERY rare occasions that she’d complain of being sore. This was becoming her “normal” and she was so strong and brave and was just accepting that. She is SO brave getting her weekly injections and taking her “yucky medicine”. Her strength truly inspires me, as I know I’m not nearly as strong as her.

Harley’s team at Sick Kids have been an absolute blessing. They are so knowledgeable and caring. They are patient with my (almost) daily emails and phone calls. They truly care about Harley and continue to give her the best care possible. 

Unfortunately Harley’s current arthritis medications are not working as effectively as they’d hoped and she is still experiencing significant discomfort and inflammation. The team at Sick Kids are diligently working to tweak her treatment plan so she can one day wake up each morning without pain, without struggle to just get her body out of bed. So she can do ALL of her exercises at gymnastics, instead of consciously avoiding the ones that hurt too much. So she can run and jump and play like a two year old should!

There are several other conditions linked to Harley’s arthritis that she continues to be screened for and we have to keep a close eye out for. Uveitis is something she is screened for quarterly. Uveitis is inflammation of the eyes and if it goes undiagnosed, it could lead to eye damage or blindness. Temporomandibular joints (TMJ) is another condition we must keep an eye out for. TMJ can cause jaw displacement. Psoriasis is another condition she is at higher risk for, amongst several others. 

We are told that, due to Harley’s young age, being female, and having inflammation in particular joints (like her wrists and ankles), her arthritis is expected to be severe and persistent throughout her life. There is currently no known cause and no cure for JIA.

Cassie + Friends is a wonderful Canadian organization whose mission is to support children and families who are living with paediatric rheumatic diseases. They offer education, support and community. They offer funding and support to researchers who are working towards a pain-free future for these children. 

We will be completing a 5k walk this Fall, as a family, to help fundraise money for Cassie + Friends Society. As a mother, I feel so helpless every day, not being able to take her pain away. It’s been a very difficult journey and we’ve spent the past few months trying to wrap our minds around all of this, while taking care of our sweet girl and navigating her journey towards living the most “normal” life possible. Participating in this walk brings us HOPE. Raising money for juvenile arthritis is just a small part that we can do to try to support this cause, and a brighter future for our girl and other children affected with this disease. 

If you are able, please consider donating to our team, “Hope for Harley”. We will be forever grateful.