Following her mum instincts, Jenni recently took Jeremiah for scans after observing an altered gait to rule out an abnormality that may have indicated a problem with his neurological development as he is learning to walk. She was hoping that what she had noticed would amount to nothing. But, as it turned out, her gut instinct to keep pushing for a specialist referral was spot on. An MRI discovered that he has a kind of Spina Bifida characterised by a fatty lump tethering his spinal cord in his lower back, which if left untreated, would likely render Jeremiah wheelchair bound in the near future as he grows. This lump needs to be removed and the spinal cord freed so that he can continue to grow and develop with the cord untethered within the spinal column. Leaving this would stretch the cord as he grows and hinder the use of his legs, bladder and bowel permanently.
The surgery is urgent and is going to be undertaken on Tuesday 16th January 2018 at the childrens hospital and may not be the last time he will require surgical treatment. The childrens hospital is a 3 hour return trip for the family and the pressure of both parents wanting to being at Jeremiah's bedside during that stay, not to mention the recovery time and potential for necessary rehabilitation post will put a significant strain on the family not only emotionally, but financially.
When a family member is placed in hospital that far from home, costs might be covered for the patient but they don't extend to cover accommodation and food for the carers. Often family will need to purchase things like toiletries and other incidentals while they are away from home as well. And then there is hospital parking which can often be exhorbitantly priced just to visit each day. There is also the financial pressure of being forced back to work while the patient is still recovering at home to ensure that bills are still getting paid and food is on the table. But, when this is a small child, what parent would want to be in the situation where they have no choice but to return straight to work?
Jenni has just started a new job, closer to home and Scott is currently studying. Jenni has also been managing a spinal injury of her own, that happened just after Jeremiah was born and causes her significant amounts of pain day to day, just to care for him. She will also require surgery for this in the future to help ease the pain, but due to the complexity of the procedure, won't be fully covered by medicare.
This young family have been through enough and need to catch a break. The funds raised will be made available for Jenni and Scott to draw upon as needed to help the financial burden of being away from home while Jeremiah is in hospital. If enough raised, this will also help Jenni be able to have her much needed surgery when the time is right, so that they can all get on with enjoying the family life that they planned.
Any amount you can spare would be greatly appreciated. Every little bit counts. Jenni and Scott are among the kindest and most generous people around and deserve to receive some of the kindness back that they bestow unto others every day.
Thank you for your generosity.
Click here to view Jenni's blog, Waiting for a miracle .
This page was instigated and set up with Jenni and Scott's permission by members of their IVF mums and bubs group. We are a tight knit group of 54 women who have known each other since we were first pregnant with our babies that were all born between September and December 2016.
- Fiona Day
- Jon & Ruth Brandon
- Yarni MacAlister
- Cheryl & Keith Tolmie
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