Aleacia's HSP Journey

15/09/2021

Background A limited number of publications have described a reduction of spasticity associated with hereditary spastic paraplegia (HSP) after selective dorsal rhizotomy (SDR). Typically, the SDR procedure is performed on patients with spastic cerebral palsy to remove spasticity and to help these pa...

07/06/2021

Miss Aleacia is currently in hospital. Last Wednesday she came down with temps, nausea and vomiting and severe stomach pain.

Two MET calls at the first hospital had us fearing sepsis, they then transferred her to her regular treating hospital. UTI has been diagnosed and intravenous antibiotics are being administered. There is still something else going on. The pain, fevers and nausea haven’t stopped. She’s had numerous ultrasounds and X-rays but nothing stands out, so today will be a CT scan and possible laparoscopy.

Please keep her in your thoughts and prayers.

01/02/2021

Aleacia can’t wait until the last of the bleached bit of her hair is cut out so she can grow it to donate again. She makes me so proud, it’ll be her third donation.

We followed a hair donation through the Wigs For Kids process to find out. Wigs for Kids is an organization that has been building self-esteem in children f...

09/01/2021

I thought I’d share this... Aleacia hasn’t been able to sit on the side of the bed since she left hospital in June last year.
In hospital she had a team of physios there to achieve this and it was painful for her.

At home I’ve been unable to do this and she’s been unwilling to even try, making dressing her quite difficult.

Because our car isn’t modified yet I haven’t been able to take her ‘to’ a physio so now we have a physio who comes to our home and has started working with Aleacia and her support workers.

Onwards and upwards!!

PS. That’s a hair towel, not a bizarre hat, lol.

09/12/2020

It's been a while since I've done an update, the loss of Aleacia's wonderful dad has turned our lives upside down and we take it just one day at a time.

Aleacia's back is improving pain wise and she is able to spend longer in her wheelchair now. She is still having a lot of pain with her tailbone and if she slides forward in her wheelchair (as often happens on the bus) she can quickly get skin breakdown. I've brought this up with the orthopaedic surgeon and he seems to think the pain could be from the realignment of her hips with the surgery. For now we are going to play it by ear and see how she is in a couple of months. Although the pain area is close to where one of the screws could be. Praying it's not from the screw because that would mean more surgery.

Aleacia has been so strong since the loss of her dad. We talk about him all the time and what he would do or say in particular times throughout our days. Beautiful friends bought her a teddy that has a photo of her dad on it's shirt and each night she kisses him goodnight and says 'Goodnight daddy pussycat, I love you daddy pussycat', just as she has always done.

Whenever Aleacia sees me struggling emotionally she will say to me, 'Mum, do you need a cuddle?' I never say no, her cuddles are so comforting. We usually end up laughing through our tears as she says one of her dad's lines, 'Do I need to get an umbrella?' or 'Do I need to call a plumber?'

Christmas this year is going to be hard. I am doing my best to make it special for the kids and to make sure their dad is still included in every aspect. Hence our photos in front of the tree this year we are each holding a photo of our darling. It was Aleacia's turn to put the Angel on top of our tree this year and from now on the Angel will hold our darling in her arms. He has always been our angel.
So many triggers, so many tears, but also so many fond memories and laughter. Such confusing, mixed emotions.

If I don't manage another update beforehand I'd like to on behalf of our family, wish you all a Merry Christmas.

07/10/2020

Little videos like this are going to mean so much to Aleacia.

We were going to trial a Rifton Pacer but they didn't have one available, so they suggest we try this one. Leacie blew our minds being able to use it from wo...

07/10/2020

John loved to hold Aleacia's hand and walk beside her. Getting a power chair was such a game changers for them both.

Aleacia got her new Magic Mobility power wheelchair yesterday so now daddy can walk beside her holding her hand, instead of always having to walk behind her....

06/10/2020

In loving memory of Aleacia's loving daddy and some of the special moments they shared.

Aleacia is being incredibly brave and keeps reminding me that daddy will forever be in our hearts.

Life can be so unfair.

06/10/2020

Many of you many already know, but many of you wont. Last night yesterday Aleacia's dear sweet daddy passed away after battling so hard to recover from his Stem Cell Transplant for his Leukaemia.

He never made it home to be with us, he'd fought so very, very hard but after being in hospital for over 4 months his body was so very tired. Aleacia had not seen her daddy pussycat since June 8th, even then it was only a visit of a few hours while she was still in hospital herself.

Hearing her say through her tears, "The first time I get to see dad in months and I have to say goodbye." broke my heart. They were so incredibly close. She was his pussycat and he was her daddy pussycat. All he wanted was one more daddy-daughter date before he had his transplant but because she was in hospital and because of the Covid restrictions that wasn't possible so they spent a few hours together at the hospital. She will miss their daddy-daughter days terribly.

Our family is in a state of shock, her dad was starting to improve but then took a turn for the worse. We are all heartbroken. This man was my whole world, the love of my life, the man of my dreams. He treated me like a queen and Aleacia like a Princess, he has taught our son what a real gentleman is. None of us can imagine a future without him in our lives. Our pain is incredible.

We never ended up being able to get the accessible car in time for her to visit her daddy in hospital, but we are still in desperate need of one. We had hoped to get a smaller car, unfortunately the size of Aleacia's wheelchair ruled that out. We've been told she needs at least a Kia Carnival and getting one of those that isn't too old and has low km's it's going to cost more than we originally expected. I am begging you if you could share our story around to help us realise our dream. The whole time John was in hospital he worried so much about us not having an accessible car, worried that our old car would break down on me driving the long trip up to see him and back.
Our life is never going to be the same, getting an accessible car would make it just that little bit easier.

Thank you for taking the time to read this, and to those who have shared it for us.
gf.me/u/yqkxxw

Hi, my name is Leanne and I am desperately seeking the assistance of ca… Leanne Lawtey needs your support for Wheelchair car for daughter of Leukaemia patient

13/08/2020

When Aleacia was in hospital for her scoliosis surgery and intensive rehab earlier this year they asked if they could do a photo shoot with her while she was doing her school work. I wasn't there that day and wasn't sure what it was going to be used for but I found out today when a lovely friend shared this with me. 😊