Blessed Mum of my 4 Amazing Bairns & 2 Pups. Nana to my Beautiful 2 GrandBairns Happiness held is the seed; Happiness shared is the flower. John Harrigan 🌸
This is one of my most Beautiful memories & videos I have of Freya 🌹
Freya is very rarely part of my life on trips with me or her older siblings. it’s kinda like a double life I live….it’s always been painful and still to this day & forever will cause us all sadness & trauma.
@MartinSLewis
@BBCr4today
I have no way of cutting back on the energy I use to keep my daughter alive & comfy so are Truss, Sunak, Johnson & Nicola going to help me pay for the energy I use to provide my Freya with an intensive care micro ward at home? This is real life for some families.
#EnergyCrisis
@carolvorders
I heard Ed Davey very emotionally talking about his son and how he would be loved and cared for when him & his wife are no longer able.
A very distressing thought that I have had…..
We need more politicians with lived experience of real life!
My health vulnerable Daughter Freya let down again tonight by
@NHSForthValley
complex care Team. This time someone has deliberately cancelled her night nurse tonight who had been booked a few weeks by Staff bank to cover sick leave. This is now putting Freya at risk by having no
At 3am this morning, Freya was taken in an emergency by ambulance to
@NHSForthValley
hospital with severe respiratory problems. Although all the staff that look after Freya at home are wearing masks after I have had to create a storm about it publicly which has left me completely
@MartinSLewis
What has
@trussliz
done to help Freya…..do you think I can afford to pay £505 a month to Scottish power? It amounts to 35% of my income. My older Daughter & I live in fuel poverty to make sure Freya’s medical needs are met!
#EnergyCrisis
#CostOfLivingCrisis
New Years Day Freya became really poorly, we got her to resuss where me & a team of medics & nurses stabilised her, however she deteriorated the next morning & needed ventilation then to Glasgow. Freya is fighting - please pray she comes through this ♥️ 🙏
#palliativecare
.....the best Christmas gift ever to be Covid negatvie, being able to have cuddles with my Beautiful Freya.
#freya
#PalliativeCare
#Covid
Merry Christmas 🎅 🎄 ❤️
Freya woke up today for a wee while. However, she needs lots of rest to get better. It's good to see that
@NHSForthValley
have listened to me and are keeping Freya safe with all staff involved in Freya's care wearing masks to help protect her as much as possible.
I had to share this photo of my Beautiful happy girl enjoying sensory time at school today……♥️
This week has been desperately distressing for me, this photo has just lifted me to the happiest place!
I love you so much Freya…..you are my twinkling ⭐️
#PalliativeCare
.....so I have finally had Freya's test results whilst she's in hospital, my poor wee Lassie is fighting 3 respiratory virus's (rhino virus, haemophilus influenzae and Flu A & 1 chest infection. Freya was almost ventilated last Christmas fighting flu A. Freya was not able to have
@RobbieRinder
Meanwhile families like mine who are not average
#energy
users & need energy for life saving medical equipment to keep our loved ones alive, comfortable & safe are facing another winter of complete financial hardship…..are you not ashamed of the colossal profits you are making
@MartinSLewis
@trussliz
I cannot afford this!
@trussliz
start providing realistic support for the most vulnerable in the UK & stop ✋giving to the wealthiest. It’s disgusting 🤮 the way in which you are dismissing those who need it most to survive!
Day 12 PICU
Freya is off the ventilator, been gracefully fighting her way through the past 2 weeks to breathe herself.
My girl has been through so much & I have had to stand back, watch & trust the medics that they will help her smile again.
#Freya
#PalliativeCare
#Love
Distressing Post!
I am sorry for the emotional video but this is how that phone call affected me this morning whilst I was trying to work and organise Freya’s trial for BIPAP ventilation for home. I don’t want anyone to see me having a vulnerable emotional episode but I have to
Day 21
We brought our Beautiful strong girl home this afternoon. ❤️
Freya is still recovering & needs lots of non invasive intensive care which is why there's no place like home for her to get all the love and best care she needs for her to be able to beam her Precious Smile
……
@NHSForthValley
not sure why you are still objecting to staff wearing a mask all shift with Freya, just like I do when I am looking after her…..to think you are completely aware of how health vulnerable Freya is and you are still ranting to me about following
@ScotGovFM
@MartinSLewis
I simply can NOT afford to pay over £700/a month for my energy bill. I can NOT cut back on any of my usage for my Freya’s medical care that we provide 24/7 at home with a Team of NHS Nurses. I can NOT stop my Direct Debit for fear of dire lonterm consequences.
#EnergyPriceCap
Day 18
Thankyou to everyone for your messages of support since the 1st January when Freya became really poorly ♥️
We were transferred from Glasgow PICU to our local hospital last Sunday afternoon. Freya’s breathing is much better however she is still very poorly with a
Positive Post!
I just want to thank everyone here for all of your love and support over the past 5 weeks.
It’s been a really tough journey for us as a family trying to ensure Freya has the best care provision from
@NHSScotland
in an out of area hospital. Freya was put forward
After a tough few weeks of living on a building site within our home breathing in
#mold
- a hospital admission with Freya & feeling like happiness for my family is so unachievable 😢 my wee ⭐️ wakes up after days & gives me the best smile full of Love ❤️
#Freya
#Palliativecare
……so Wee Yin woke up when she heard my voice this afternoon, then she smiled from her Beautiful Heart ❤️ diminishing all the pain we have both felt since the beginning of this year.
Happy New Year 🙏
#PalliativeCare
#Health
#Freya
.....the best Christmas gift ever to be Covid negatvie, being able to have cuddles with my Beautiful Freya.
#freya
#PalliativeCare
#Covid
Merry Christmas 🎅 🎄 ❤️
I can’t help but feel so lucky that I am able to work from home and stay close to Freya.
There isn’t anyone I would rather spend my tea break with than this Wee Beauty, we both enjoyed listening to the birdsong and feeling the fresh air on our faces earlier on today 🦅 💨
Our
@SkyNews
So this is the time of day Freya has the most routine medical interventions…not to mention any emergency that may happen.
@trussliz
@NicolaSturgeon
any suggestions of how to keep our vulnerable children safe at home during these outages? Or should we just call an ambulance?
@carolvorders
Meanwhile families like mine who are not average
#energy
users & need energy for life saving medical equipment to keep our loved ones alive, comfortable & safe are facing another winter of complete financial hardship…..are you not ashamed of the colossal profits you are making
…..a mixed emotion day! Absolute happiness for my oldest daughter who passed her driving test today (first ever test with no minors) a complete ⭐️
Then I think of Freya and how she will never pass her driving test…..in fact she can’t even leave her garden in her
Will never forget when I asked Freya's Disabilities SW if I could have more respite to take my 20 yr old son to have chemo in Edin every week. It was a loud NO! "He's an adult & needs to get on with it himself!" No-one should have to hear such heartless words
#Cancer
#PTSD
Sadly it’s been a very traumatic eve for Freya with her airway. Enroute to
@NHSForthValley
A&E. The 2nd Jan 2023 I had to go to A&E it was shambolic. I can only hope that Freya will have the care she needs & be kept safe in the appropriate environment.
#PalliativeCare
@Lewis40Martin
I'm a band 0 and my Daughter gets the best ever nursing care from me ❤ even in the garden listening to the birdsong and trees 🌳 whistling in the breeze. I can nurse without the mask 😷 too in our garden ❤
A dream for so many years was to take Freya to a Festival ⛺️🎶🌸 it’s not Belladrum or The Wickerman where I used to take my older children when they were Wee… however it was safe and Beautiful…..
My Grandchildren & Freya’s big Sister enjoyed a special hour with Freya having
Lovely to be able to tell our story today about the love & support provided by Rachel House Children’s Hospice
@supportCHAS
for my family the past 12 years.
“CHAS you have certainly supported keeping the Joy alive in all of my family’s life”.
#PalliativeCare
#hospice
#Freya
Emotional Post!
A beautiful Saturday evening…..
Freya had a few hours on her BIPAP machine earlier on today, she was completely settled with no need for oxygen.
She began to wake up over an hour ago and had the biggest smiles whilst wearing the mask….this warms my heart ❤️
Happy 14th Birthday Sweet Child 'O' mine 💗
An impromptu breakfast at Mummys favourite Cafe - for the first time ever with my Beautiful Girl.
I love you trillions Freya....thankyou for choosing me to be your Mummy 14 years ago. ❤️
#PalliativeCare
#Freya
#HappyBirthday
Here’s my thought for the day with regards to
#CarersWeek2023
I think when you are caring for your child with intense medical needs & work because you have to so you can protect your
#mentalhealth
, you are completely dismissed as being identified as a Carer by the organisations
I have to say I have so much appreciation for Freya's NHS staff who have ralied round since this awful event last night to support me with her at home today and tonight by doing extra long shifts they weren't originally scheduled in to do. I want to Thankyou all too for all of
A few hundred pounds higher……it’s thousands for me and many more people with a high level of medical care at home. Do you actually understand what it is like to worry about how you are going to pay your bills to keep you Daughter alive!
Naw!
@RishiSunak
@afneil
#EnergyCrisis
@MartinSLewis
@BBCr4today
I have no way of cutting back on the energy I use to keep my daughter alive & comfy so are Truss, Sunak, Johnson & Nicola going to help me pay for the energy I use to provide my Freya with an intensive care micro ward at home? This is real life for some families.
#EnergyCrisis
…….it’s just that smile. I ❤️ you so much Freya. You are the meaning of Resilience & Happiness.
Never stop smiling Beautiful Wee Yin 🌹
#PalliativeCare
#love
#beautiful
…….I’m still waiting for
@NHSForthValley
to support my Beautiful Freya to have a trial of BIPAP that her Forth Valley &
@NHSGGC
respiratory consultants both put her forward for to provide her with a better chance of survival and ultimately a better quality of life.
The
Thankyou
@LauraAlderman_
for giving me the space to tell such an important story for all unpaid carers, social care & our forgotten families not just during the pandemic for as long as! time to start prioritising the workforce that are being taken for granted.
@NicolaSturgeon
@sissell_black
@NHSForthValley
Past few weeks have been horrific. My family and close friends are completely worried for me - I have no choice but to keep standing for Freya 😢.
Yet another challenge in our lives!
Please Re-Tweet to make sure Freya and her friends are kept safe whilst being picked up from school.
I had to share ♥️
All you need is love!……along with the car parking space you were promised at School to ensure Freya can safely access
“If it isn’t working, change it, fix it, do it better”
Actress Kate Winslet says more should be done to help families with the cost of living after she donated to a woman struggling with energy bills
I had the opportunity to be a voice at Consumer Scotland's
#energycrisis
event today, campaigning on behalf of families caring for their children at home with a high level of medical need.
I eventually got home in time to see Freya with her music therapist enjoying 🎶 ❤️ 🎶
…..a Wee Annual Leave day from work….spent here
@ScotParl
talking to MSP’s about how they can support families looking after children with a high level of medical need at home appropriately through the
#energycrisis
#costoflivingcrisis
@Miles4Lothian
Thankyou 🌹
so it’s up to over £1000 a month now
@ScottishPower
. This is actually causing me severe distress. How is this actually allowed
@NicolaSturgeon
? Does anyone in Scot Gov Leadership actually give a !! about the people of Scotland? What’s your solution
@AnasSarwar
.
@LauraAlderman_
…..so whilst Freya was fast asleep when we got home from school with her today, I was telling my friend about the dreadful week we have had regarding
@NHSForthValley
& their lack of support with Freya’s BIPAP trial. I also mentioned how supportive all of you have been on this
✨ A heartfelt thank you to Scottish actor and longtime friend of CHAS, Ewan McGregor, for his wonderful visit to Rachel House! 🎉
Ewan has been supporting CHAS since Rachel House first opened in the 90s, and spent quality time with the children staying at the hospice. (1/2)