Our resilient little boy Harrison
What’s it like being the parent of a child with a chronic disease? This incredible story is brought directly to you by our guest contributors, Lisa and Adam - aka the parents of Wish child Harrison.
Harrison is 5 and his wish is to pat and feed a rhino. As he waits for his wish to come true, his parents have shared the highs and lows of Harrison’s journey with kidney disease.
Background
Meet Harrison
Our little boy, Harrison is 5 years old. Harrison has Chronic Kidney Disease (CKD).
Harrison got diagnosed at 4 months of age when he got really sick and was rushed to hospital suffering seizures. After many painful tests during his first year of life, we found out that Harrison's kidneys had not formed properly in utero and were 'dysplastic'. One kidney was functioning at just 11%. Harrison had his first operation at just eight months old.
Since then Harrison's been in and out of doctors' offices every couple of months and drinks plenty of water because they help 'fix' his broken kidneys.
Daily life
What daily life looks like
If your look at Harrison, he looks like a healthy kid. That is because CKD is a silent disease.
Our gorgeous guy suffers with daily incontinence, growing issues, iron deficiency, speech delay and many learning difficulties, which as he gets older are becoming more prevalent.
We have recently been told his learning difficulties and delay would have been caused by his failure to thrive in utero.
We don't know when his kidneys will decide to fail, it's a horrible waiting game, but what we do know is that at some stage during his life he will require daily dialysis and possibly a transplant.
The doctors have said there's no way of being able to predict how quickly they will stop functioning or reduce in function.
Life and love
Our strong, sweet boy
For now we do what we can as a family to let Harrison be a 'normal kid' and support him with his daily struggles. As his parents we have now learned to deal with the fact that Harrison will always live with a kidney condition and we just need to live each day without worry and deal with what the future holds when circumstances change.
At our most recent renal appointment, changes in Harrison's kidney health have led doctors to believe further investigations are required. Harrison underwent chromosomal testing and we now wait for a few more months to receive the results of these tests.
I asked Harrison yesterday if it bothers him that he has CKD, to which he replied, 'nah mum it's okay'. He is the most resilient boy we know and we couldn't wish for a sweeter, kinder or more beautiful boy that we could call our son.
We love you Harrison!!!
-Lisa and Adam Seaward
“He is the most resilient boy we know”
The Wish Journey
How a wish comes to life
1. Wish Capture
1. Wish Capture
Depending on availability, either our Make-A-Wish volunteers or our Wish Catcher team will arrange to meet each child (either in-person or virtually) to capture their greatest wish idea, getting to the heart of what they truly want and why. This is part of what makes Make-A-Wish unique, giving children full creative control while exploring their wish idea.
2. Wish Design
2. Wish Design
Back at Make-A-Wish HQ, we collaborate with families and volunteers, with support of the medical teams, to create the ultimate wish experience for each child.
3. Wish Anticipation
3. Wish Anticipation
In the lead up to the wish, we take each child on an anticipation journey designed to build excitement, keep them engaged until their wish comes true, and provide a welcome distraction from medical treatment. Anticipation can be incredibly powerful, helping to calm, distract, and inspire kids at a time they need it most.
4. Wish Realisation
4. Wish Realisation
This is when the planning, preparation, and anticipation of the wish finally comes true. Children get to experience their greatest wish – it's everything they’ve imagined and more.
5. Wish Impact
5. Wish Impact
Wish impact studies show that a child's wish lives on, long after the moment. A wish gives more than just hope – with an incredible and lasting effect on the lives of wish kids, their families, and wider communities.
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