In the third of my Acorns Inspirations interviews, I am very happy to be joined by someone very special. Someone who has faced a lot of challenges in her life and has been a constant source of inspiration. She has also raised a fantastic amount of money for Acorns Children’s Hospice with two physical challenges.
Today’s guest is my daughter, Louisa.
Louisa's Story
Louisa is now 15 and was born 16 weeks prematurely in 2006. My wife, Rini, went into early labour while carrying triplets. She was transferred from Worcester to Liverpool Women’s Hospital and gave birth firstly to Jewel, then two days later to Louisa and Milla. At birth the triplets weighed 630g, 620g and 665g respectively.
Jewel was very poorly and sadly only lived for 17 days. The chances of survival when born at 24 weeks gestation are very low. However, Louisa and Milla continued to defy the odds and day by day, week by week, month by month, made progress and gave us hope they would one day come home to Worcester. Over the course of 5 months in Liverpool Women’s Hospital and a month in Worcestershire Royal Hospital, Louisa and Milla faced many setbacks. Louisa and Milla both had operations on their eyes and battled infections. Louisa had two operations on her eyes in the space of two week, something her consultant had never previously done. Due to his amazing skill, Louisa’s eyesight was saved – although her condition of Retinopathy of Prematurity (retinal detachment) was so severe, it left Louisa blind in her left eye and partially sighted in her right, with only a 20cm field of focus. Milla’s eyesight was also saved and she had much better eyesight.
In addition, Louisa had an operation to close a valve in her heart caused by a condition called patent ductus arteriosus.
Around a year after coming home, Louisa was starting to hit some milestones. However, Milla was not. She was then diagnosed with severe spastic quadriplegia cerebral palsy. Milla’s condition meant that she was unable to control her muscles in all four limbs, leaving her unable to sit unaided, unable to stand and walk and dependent on a wheelchair. In addition, Milla was non verbal and had frequent hospital stays, including operations on her legs and her stomach. Milla was eventually tube fed and needed 24 hour a day care.
While Milla took so much of our attention, from setting up tube feeds, administering daily medicines, attending to her at night as she had very poor sleep patterns, Louisa still had her own challenges. She was unable to talk until she was around 3.5 years old. She was unable to walk without the aid of support initially, due to a lack of confidence and lack of vision. She only began to read at around 9 or 10 years old. In fact the first word she recognized and read were the three feet high letters that spelled out ASDA as we passed the supermarket in the car!
Acorns Children’s Hospice
We were contacted by Acorns when Louisa and Milla were around 1.5 years old. We were offered respite care stays for our daughters and were very grateful to be able to rest from the exhausting care of two disabled children. Acorns was a safe place, a happy place, a place of care and smiles, love and enjoyment. Milla enjoyed the sensory room, exploring the textures, sounds and lights, as well as the hydrotherapy pool – somewhere warm and relaxing, where her muscles relaxed and didn't spasm and cramp painfully. Louisa enjoyed the music room, banging drums and making a noise.
Eventually, Louisa didn’t need Acorns assistance, but Milla received regular stays. In fact, Milla used to stay at Acorns during respite and not go to school, a decision we felt benefited her greatly as she had lots of attention and interaction with staff and volunteers.
2016
In December 2016, while on a family trip to visit my wife’s family in Indonesia, Milla became very poorly, very suddenly. We treated her as we always had, she had experienced many coughs, cold, chest infections etc. However, within the space of 3 days, Milla passed away from sepsis. We were devastated, our world collapsed. Milla was buried in Indonesia, next to her grandfather. We had to return at some stage and when we came back to Worcester, it was to a house that was cold and silent, full of Milla’s medical equipment, clothes, toys etc. We had to bring back her empty wheelchair.
The effect on us all is indescribable. To lose one daughter, Jewel was a traumatic experience. But then to lose Milla when she was 10 and so unexpectedly, was devastating. But Louisa had lost two sisters. Milla had needed so much attention, that when she was no longer wth us, it must have been very daunting and strange for Louisa to then have our attention 100% of the time. It was hard to explain to Louisa what had happened and why. Louisa has mild global developmental delay and is currently being assessed for autistic spectrum.
Acorns were there for us again. They helped us with bereavement counselling and offered Louisa sibling support. Acorns organised a specially engraved memorial stone for Milla which is in their memorial garden at the Three Counties Hospice in Worcester. They also held a special memorial day for families who had lost children during the previous year. They were and remain friends and are always happy to see us, with a slice of cake, a cup of tea and lots of smiles.
Fundraising
In 2014, we took part in the Triple Run Fun Run Event for Acorns. We pushed Milla around a 1km family course and Louisa and Milla loved hearing the cheers of the spectators as we rolled in over the line. We raised over £1,000 for Acorns for that event. I have done a number of events, from cycling long distances to endurance walks for Acorns before and after Milla passed away. But in 2018 Louisa wanted to do something to remember Milla and raise money for Acorns.
We planned a short run – one lap of Pitchcroft, the racecourse in Worcester, a distance of around 2 miles. Given Louisa’s poor vision, running has always been a challenge. But she was determined to do it and Rini and myself accompanied Louisa as she made her way around the course. Not satisfied with that, the following year, Louisa walked and climbed 4 miles (the furthest she has ever walked) along the Malvern Hills to the summit of Worcestershire Beacon (425m).
About to be interviewed by Andrew Easton on BBC Hereford and Worcester radio
The videos of her completing both events went viral on Twitter and not only raised awareness of Acorns but brought in many donations from kind strangers. Louisa raised over £3,000 in the two events. Louisa was also interviewed live in the studio of BBC Hereford and Worcester about her fundraising and has many supporters from people such as Dame Kelly Holmes, Sir Chris Hoy and many famous professional cyclists such as Marianne Vos, multiple World, Olympic, European and national champion.
Reaching the summit of Worcestershire Beacon (425m), the highest point of the Malvern Hills
So who better to interview as part of Acorns Inspirations?
Interview with Louisa Frobisher - inspiration and fundraiser extraordinaire!
T) Tony L) Louisa
T) Where did you first hear about Acorns?
L) Because I was born 16 weeks premature in Liverpool with my triplet sister Jewel and twin sister Milla. We were in hospital for 6 months. Jewel passed away after 17 days. I had an operation on my heart 2 and two on my eyes...I am blind in one eye and can only see a bit in my other eye. Milla had cerebral palsy and needed a wheelchair. She couldn’t walk or talk. Milla and I went to Acorns.
T) Why did you want to get involved and fundraise for Acorn's Children's Hospice?
L) To help Acorns support children like Milla.
T) Can you tell me a little bit about the fundraising events you have done you did and how you came up with the ideas. Do you know how much money you’ve raised so far?
L) I did a fun run, 2 miles around Worcester racecourse. It was tiring and exhausting but I did it. Then I walked up the Malvern Hills, 4 miles....I wanted to raise money again for Acorns and remember Milla.
T) Have you got an idea how much money you’ve raised?
L) Over £3,000
T) What was the most interesting or satisfying part of fundraising and the challenges? What do you enjoy most?
L) Doing the event and when it finishes and seeing all the money I raised.
T) Is there anything difficult or frustrating you find about it?
L) Walking downhill, I was unstable and wobbly ..Going uphill ..my legs ached.
T) Are you thinking of any more fundraising challenges or events. If so, what?
L) I have no idea. We wanted to climb Pen Y Fan, but then there was Covid. Maybe Pen Y Fan or a ‘Moviethon’ – watching films for 12 hours nonstop!
T) Is there a challenge you’d like to do? …If you had the choice of doing any challenge
L) I’m not sure...something involving horses
T) Who inspires, motivates and encourages you to keep going and who makes a difference to you when things get a bit tough?
L) My Dad (😊) and his fundraising, all the people at Acorns who are always kind to me when we visit Worcester Acorns - they always give me a piece of cake.
T) What’s your message to other people who would like to get involved in fundraising but haven’t done so, for any number of reasons?
L) It's good fun and a good idea because it helps other people.
Quick Fire Questions
1. Hobbies and Interests
I love everything about horses. I have a large collection (over 200) of Schleich model horses.
2. Which football team do you support and why?
Liverpool because I was born there
3. Food / Dish
Chips and nasi goreng (Indonesian fried rice)
4. Music
Rock music and calm music, Skillet and Taylor Swift
5. Holiday or somewhere you’d like to go?
California. To the Return to Freedom Wild Horse Sanctuary to meet the Spirit (The horse that inspired Spirit Stallion of the Cimarron – Louisa’s all-time favourite film)
6. Favourite place in the UK?
Peterborough because my Nana lives there
7. Who would you most like to meet for a cup of tea and a slice of cake?
Jaylon Barron from Free Rein (Teen TV drama featuring lots of horses!) because she is a great actress
8. Favourite book, film, TV programme
My books - Spirit Stories (Louisa has written 4 Spirit Stories books with me and the proceeds are donated to Acorns) / Black Beauty / Spirit books based on the film by Kathleen Dewey
TV - Free Rein / Spirit Riding Free / SpongeBob Squarepants / You've been framed
Film - Spirit Stallion of the Cimarron / Spirit Untamed / Black Beauty (1994) / Balto
9. Running, walking, cycling, swimming or something else?
Riding horses
10. What do your family, friends and colleagues think about your fundraising?
They think it is brilliant - they love my books and encourage me in the challenges
Thank you so much Louisa for being a fantastic Acorns Inspiration. I know how proud we are of you and so too the Acorns family. But I also know your sisters Jewel and Milla will be very proud of you and looking down on you with big, beautiful smiles.
At Acorns for the Three Counties, Worcester, after completing the Malvern Hills Fundraising Walk. Reading a personally written card from Toby Porter, CEO of Acorns Children's Hospice. |
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Thank you for reading
If you would like to get in touch, send me an email
Tony Frobisher, Parent Carer Champion, Acorns Children's Hospice