This week a young and beautiful life was lost to aHUS in Brazil due to Soliris not being funded. I also remember a pre-schooler (another from Brazil) losing their battle the Christmas before.
This is such a huge problem in certain countries around the world, and our reality too if we cant change things in NZ. Everytime this happens I am reminded that we can't take all these good days for granted, things can change in an instant. That fear hangs over us always, creeping back ...in particularly strong with every tragic loss we witness within our global aHUS family.
A friend and I have been in touch with the new Labour Health Minister and there is no more support than there was from National which is very disheartening.
So its back to the drawing board and perhaps time to encourage our 10,000 Hands Campaign again so Jethro will have funds to begin purchasing Soliris immediately should his health take a turn. We so far have enough for several months worth but we NEED to grow it to ever have ongoing access to treatment.
Please take a moment to share this post with your friends, families and please consider being 1 of 10,000 Hands to help save Jethro from such a fate.
You can set up an AP of $1 per week to
The Jethro Morrow Health Trust
TIA and thank you to all our wonderful loyal supporters for their ongoing contributions 💓💓💓
A huge happy 8th birthday to this lil fella!!
I am so thankful to have reached his 8th year with him being in such good health and just thriving!
I am really sorry I havnt done updates in a long time, sometimes I find it nice just to step away a bit from social media and focus on the life around us. Ill fill you in now on a bit of what we've been up to...
As many of you know I began homeschooling Jethro in term 2 of 2017. This has been one of the best decisions I have ever ...made (and moving to Mangawhai). He is progressing in absolute leaps and bounds being able to learn in a 1:1 environment. I have learnt so much about him that I didnt really see when he was off at school everyday, he'd come home and tell me very little about his school day but learning along with him opens all these avenues of his character I didnt see outside a learning environment.
He has enjoyed an array of classes on top of homeschooling... art classes, horse riding, and his kempo and St Johns Youth he's been doing for years. This week hes on a 5 day theatre camp with his sister and other homeschool friends and they will perform an Irish production for us at the end of the week. His sister will be joining us in homeschool this year too and we have very exciting plans in place. The 3 of us cant wait to get started (hurry up holidays).
We had a really rocky start to 2017 with Jethros port infections and a port replacement, but since then it has all been onward and upward with not a single issue. We box on doing his plasma infusions as they continue to still keep his aHUS at bay.
All in all life has been fabulous, very rewarding and we are very hopeful for a great 2018. #feelingblessed
As many of you know Jethro, Cailin and I are a huge part of St John Youth. The kids are cadets, and I am a leader and the Assistant Divisional Manager of our division in Northland.
We spend a huge amount of time volunteering and doing what we can to educate others and support St Johns as we know from personal experience how fragile and vulnerable life can be.
Every year hundreds and thousands of volunteers invest time, effort and money into being available to save lives thr...ough St John. It costs a lot to operate services such as the Rescue Helicopters and Ambulances, so the leaders at our division and I are pledging to raise $5000 to give back to St John to help save more lives. We are entered in the 15km rescue run with simulated natural disasters and patient rescue challenges.
Ive had the ambos sort Jethro out many a time when his health has declined rapidly and things have been very scary. I am so grateful that these services are available to us when many of the staff are not receiving an income for what they do.
Please help us give back and donate a little to our cause.
I understand that many of you donate to Jethros medicine already or have in the past, I do not ask more of you as you have given so willingly before. But to our followers who have perhaps been watching our journey and would like to do something that would benefit many New Zealanders, thank you in advance! 🏃♀️🚑
We are so very blessed by the lovely locals in our community. So many nearby businesses have reached out to give Jethro opportunities that will help with his development or give him amazing life-experiences and skills. Today I wanted to shine a light on Sarah and Marilyn who have so kindly donated riding lessons to Jethro from Wellsford Riding School.
Horses are often used as therapy pets for special needs children and for those on the autism spectrum.
Jethro had his first s...ession with Marilyn yesterday and met the lovely, gentle-natured Maggie. He took to her like a sweet-tooth to cake. Marilyns teaching and approach is wonderful... Jethro who is usually afraid of new experiences was confidently guiding Maggie around obstacles, stopping and startimg her and climbing on and off by himself by the end of the lesson. His balance (something that has been a weakness over the years) has improved so much that Marilyn was impressed enough to give Jethro the opportunity to try bare-back riding at the end, which he too embraced with confidence and skill.
Jethro loved this experience and I was so pleased to see him discover a new happy-place. Thank you so much Marilyn and Sarah for this, we are so grateful and cant wait for next weeks session 😊
For those that missed our segment in last night's Seven Sharp here is the link to the full story. It was such a pleasure working with Seven Sharp and our amazing team at Whangarei Hospital to get more awareness out there for Blood/Plasma donors. I really hope it encourages many people to consider giving blood. I can't put into words how proud I am as a parent of Jethro for having the confidence and courage to share this part of his life with thousands of strangers whilst under the pressure of having a camera rolling (I know I struggled). His gentle spirit, quirky nature and extreme love for life really shone through on air, I can say without a doubt that he was 100% himself whether the camera was rolling or not.
It's World Blood Donor Day today and we know first hand how crucial donors are. Our story is airing tonight on Seven Sharp to share with NZ just 1 example of how necessary it is. Jethro has received plasma donations from 673 people to date, without donors Jethro would lose his battle to aHUS
1 year ago in order to help promote Blood Donor Week Seven Sharp were hoping to air a story on Jethro and what his life is like receiving on-going FFP (Fresh Frozen Plasma) infusions. Unfortunately our reporter had to rush off to Orlando to cover the Pulse Massacre story on the day we were to film. As it is once again Blood Donor Week we will be filming the story tomorrow and it will air that same evening... so check us out on Seven Sharp, Wed 14th June at 7pm 😀
Sorry for not updating in a few days, we've been absolutely physically and emotionally exhausted after last week. Jethro had his MRI scan on friday, he did so well staying perfectly still going into the machine and fell asleep almost immediately making it very clear to look at his brain activity. We were sent back to our room aftwrward and told a neurologist was on their way to discuss results with us and that an ECG scan needed to be done on Jethro's heart (pictured) after t...he activity they saw in the brain. Naturally I freaked out thinking we were doomed with even more to worry about. Thankfully the heart abnormality turned out to be Nasal Aarythmia which is of no threat to Jethro, it just means his heart-rate beats to the rhythm of his breathing so it varies, but he is in control of it. The MRI showed nothing to confirm epilepsy at this stage which is a huge relief but it has confirmed Micropsia of the migraine variant (aka Alice in Wonderland Syndrome) which explains Jethro's hallucinations of the world around him often becoming further away and a lot smaller. This is occuring on a regular basis and is something I guess we have to get Jethro used to and try to learn techniques to calm him during an episode. We will be following up at Starship in 3 months with a diary of his episodes. For now we are grateful to be back home in our beds and catching up on rest. Many thanks to all the wonderful people that have been there for us in one way or another during this crazy time and to those who organised surprises for the kids during a very tough time for them both. It really makes some of our hard days brighter and easier to get through 😊
My little star patient ❤ He is required to lay still for approx an hour for his EEG scan, a pretty hard task to expect from a child. Jethro's so good at dealing with what needs to be done and just gets on with it, he said he'll just use the time to rest, so proud of him!
All went as planned with the surgery. But
didn't expect him to be in so much pain afterwards. As a parent, all you want to do is take your childs pain away. It hurts seeing him like this.
There's so much going on and going through my head right now I kinda feel numb. Jethro has his port surgery scheduled for today which barely worries me anymore with what else we've been dealing with lately. Jethro began having hallucinations a few weeks ago of everything around him becoming smaller and much further away. If he closes his eyes or focuses on an object they can morph into scary images too, and in his sleep he has had some spasms/jolts and stiffening of his hand.... They became more and more regular and frequent over the weekend. While we're at hospital dealing with his port replacement Ive spoken to his specialist and a doctor from neurology and they both suspect epilepsy and that these episodes are a type of seizure. After his surgery we'll be doing ECG and MRI scans to look closely at his brain activity. I am absolutely devastated that my lil man who deals with so much already (aHUS, autism and challenging problems with his vision) may have more to add to the list. Its just not fair that one little human with such a zest for life has to keep being dealt blow after blow. Brain issues terrify me so much, I couldnt bare to see him challenged in that area too. My hearts also breaking for my little girl who is having a hard time seeing her brother go through so many hospital stays this year and the separation from us that comes with that. She wrote him the most devastating letter expressing her pain and I feel so helpless not always being able to be by her side to be her rock during these hospital admissions 😔 I usually cope really well with the challenges we go through but this week has been a hard one and the surgery and tests havn't even begun yet
Today Jethro had his contrast dye scan so we could forward the info onto Starship. We are allowed to go home shortly and wait until Starship call with our surgery date. It will happen within 2 weeks so its all ready to go for his next plasma infusion. Im so happy we get to go home and prepare packed bags and sort out Cailin ahead of the surgery. Jethro also had the first birthday party invite he's had from a school friend this sunday and I was devastated at the thought of him missing it as he's watched his sister go to parties for years and never had a turn before so he may now get that chance if they schedule surgery for after sunday 😃