HopeIneverystep

02/12/2024

🚨 PLEASE SHARE – URGENT CALL FOR DONORS 🚨

“Stem cell donation is giving a gift of life. Something that has such a low impact on a healthy individual is life changing. It's such a precious gift to give anyone.”

Following a diagnosis of aplastic anaemia, the family of nine-year-old Amilah from Sussex are searching for her match on the stem cell register.

While Amilah, which means ‘hope’ in Arabic, is currently doing well, aplastic anaemia can be fatal if left untreated. A transplant may be Amilah’s best chance of survival, but currently there is no matching stem cell donor worldwide.

‘When we looked into it, it seemed there’s a lack of donors suitable for patients from ethnic minority communities. The general awareness is just not there.’

Her mum Mobeen and family are calling for as many people as possible to join the stem cell register, having discovered Amilah’s British Pakistani heritage could make it harder to find her a matching stem cell donor.

‘Amilah’s donor will most likely share her background, which is why we’re particularly calling on people with Pakistani heritage to sign up to give someone like her hope for the future.’

Since her diagnosis, Amilah has had to stop doing the things she enjoys, such as horse-riding and karate. Amilah doesn’t want to stop doing more of the things she loves or stop going to school, so finding her a match is very important.

If you’re aged 16-30, please sign up to the stem cell register today – you could be a match for someone just like Amilah: https://bit.ly/3CFk32K

Over the age of 30, or already on the register? Please share with your networks and encourage those eligible to join the stem cell register.

31/10/2024

25/10/2024

Today is , a reminder of the strength and resilience of those living with Myelodysplastic Syndromes 🩸

Raising awareness and support is crucial for finding lifesaving matches and advancing treatments.

Let’s stand together to bring hope and make a difference. 💙
”

23/09/2024

22/09/2024

Another outing for the running vests at 👟

11/09/2024

🩸Blood Cancer Awareness month - how can you help?🩸

Much has been said about the power of three, so here are three ways in which you can get involved and help those with Blood Cancer amongst a number of other disorders:

1) Sign up to a stem cell register
Only 30% of transplant patients find a match within their family. Please help their chances by signing up to a lifesaving resister through simply filling out a form and providing a swab - that’s it! 

* Antony Nolan - called ‘the squad that saves lives’ for a reason. If you are between 19-30 years old you can find out more and register here.
* DKMS - has provided second chances at life for over 110k people in the UK. You can register if between 17 and 55 years of age. 

2) Regularly give blood, platelets and plasma
The NHS are crying out for donors and their website explains it needs 3 blood donations per minute to handle emergencies, childbirth and critical treatments. 

I recognised my dad was having more than his fair share of the NHS blood stock, so I started donating to try and give back in some way. It’s the simplest of processes and takes an hour at most and they even tell you which hospital your donation goes to. Free drinks, chocolate and biscuits are available afterwards if that swings it for you.

3) Donate to our team fundraiser Hope In Every Step (shameless plug)
We embarked on a special mission, a relay race every single day whilst dad was in hospital undergoing his transplant. Each step being a stride towards raising awareness and funds for Antony Nolan. Set up by my sister to purposely make me do what I hate most, running - to date £7,320 of the £10,000 target has been raised. If you are feeling generous (or sorry for me) please donate!

It would be dishonest of me to say it hasn’t been or isn’t still is a stressful time for us as a family, and in honour of Mental Health Awareness month in October, ask you to remember something the wonderfully talented Robin Williams once said “everyone you meet is fighting a battle you know nothing about. Be kind. Always”. Please be mindful of this throughout your week.

10/09/2024

Research may reduce risk of cell rejection in treatments for illnesses such as leukaemia

10/09/2024

Back in 2019 my family and I joined a club. It’s not exclusive, the membership seems to be growing and although there isn’t a joining fee it does come at a cost. The club? It’s the community of people who have friends or family members that have been diagnosed and are living with cancer. My dad a healthy, spin going, distance running individual was told he had MDS - no we hadn’t heard of it either. It’s a rarer form of blood cancer, which over time would affect his cells and bone marrow with a life expectancy of 5-8 years. 
Since the day we got the news, we have been on what people often call ‘a journey’ meeting various consultants, amazing NHS staff, researching and reading to understand the disease we didn’t even know existed, whilst actively trying to support both my dad and the charities that would ultimately save his life. We’ve even joked we should now receive an honorary PhD in Stem Cell Biology as a result - as you can imagine, conversations at family gatherings can be a little heavy(!).

But after 5 years of monthly blood transfusions and ongoing chemo we got the news we were hoping for, although aware we would need to accept the reality of the risks that came with it - dad got accepted for a bone marrow transplant and for us, well we won the donor lottery. Anthony Nolan, the charity that hosts a stem cell register, found a 100% match.

On August 23rd this year the transplant took place and after three intense weeks in hospital dad came home. A few weeks ago, as I started thinking about writing about our experience it dawned on me that the process so far had been smooth…a bit too smooth. And then, as anxiously anticipated and for-warned by the doctors, we hit a ‘bump in the road’ and two weeks ago dad was admitted back in to hospital with sepsis. Another few days of high blood pressure (ours, not his!) and the brilliant NHS did what it excels at and they saved him…again! Dad is one for getting his money’s worth.

You might be asking why am I sharing my family’s story now? September is Blood Cancer Awareness Month🩸So what can you do? Watch out for our next posts to see how to help save lives of those affected by blood

10/08/2024

The team are doing an amazing job of completing the mileage everyday. We even got a special KM in this week, with dad coming home to continue his recovery 💪🏻

Donations are at £2,756 or 27% of our target 🎯 so please donate, in aid of 💙

31/07/2024

Running for a cause! 🏃‍♂️🏃‍♀️🏃‍♂️🏃‍♀️ 4 of our 30 runners taking part in our 42-day running challenge for . Every step we take is a step towards saving lives.

20/07/2024

Most of you know why we’re doing this challenge, so he’s an update from the man himself.

‘Well it’s the end of my first week at Kings and things have gone well apart from a couple of incidents that were dealt with efficiently by their great team here. The next week is a biggy the new chemo is expected to make my hair fall out and affect me more than previous treatments and my transplant is scheduled for Tuesday so fingers crossed all will go to plan.
Just a reminder that my daughter and other’s are raising money for the Anthony Nolan charity, they have been brilliant with their support during this journey and have even put us in touch with other families who have been through it.
Here is the link if anyone wants to sponsor Chelsey and the team. Thanks Shaun’

https://www.justgiving.com/team/hopeineverystep?utm_medium=team&utm_content=team%2Fhopeineverystep&utm_source=copyLink&utm_campaign=pfp-share

18/07/2024

Nearly time to start running 👟💙