Helping Jonah - Helping Others

Please, please sign up if eligible (it's so easy) and please share 🙏 ❤️‍🩹

This is such an important issue which desperately needs addressing. We felt helpless, alone, guilty and under immense pressure trying to keep our family supported. We had NO support whatsoever from anyone, outside of family and friends, when it came to Jonah's two siblings.

There was, and I presume still is, nothing in place to support siblings when families are going through such devastating life changing times. It was literally a case of get up and carry on as normal whilst all this is going on. It's heartbreaking for everyone 💔

I sincerely hope this amendment is passed and applaud the people behind this crucial campaign.

Today we are announcing 𝗔𝗺𝗲𝗻𝗱𝗺𝗲𝗻𝘁 𝟵𝟬 𝘁𝗼 𝘁𝗵𝗲 𝗖𝗵𝗶𝗹𝗱𝗿𝗲𝗻’𝘀 𝗪𝗲𝗹𝗹𝗯𝗲𝗶𝗻𝗴 & 𝗦𝗰𝗵𝗼𝗼𝗹𝘀 𝗕𝗶𝗹𝗹 in the House of Lords, tabled by Baroness Tanni Grey- Thompson. For too long, parents of critically ill children have endured everything life can throw at them. But it isn’t only their child’s illness that breaks families. It’s being forced to fight a system that does not work for them.

Today, under the Parents Deserve Better campaign, 𝗪𝗲 𝗮𝗿𝗲 𝗿𝗲𝗹𝗮𝘂𝗻𝗰𝗵𝗶𝗻𝗴 𝗛𝘂𝗴𝗵’𝘀 𝗥𝗲𝗽𝗼𝗿𝘁. This work began under the previous Government but was halted when the election was called leaving families in limbo once again.

We are now asking for three key areas to be formally investigated, reported on, and debated in both Houses of Parliament at no cost to the taxpayer to fix where the safety net is broken:

• A structured, proactive mental-health pathway for the whole family when a child is diagnosed: including GPs and community teams, not just hospitals.
• A systematic review of the “forgotten children”, siblings who suffer in silence while parents are forced away to care for a critically ill child.
• A full examination of the financial impact on parents, who are pushed to the brink while trying to hold their families together.

There is a devastating cliff edge in care once a child is no longer a newborn.
Support falls away. Families are left alone. The net is broken and it needs fixing.

🗓 Amendment 90 will be heard on Monday 19th January 2026
📅 Exactly two years to the day since we launched our Private Member’s Bill with Sir Oliver Heald.

This is not about politics. It is about parents. And it is long overdue.

Support our campaign for better www.parentsdeservebetter.com

We would like to wish everybody a Very Merry Christmas - with Best Wishes for a Happy, Healthy and Peaceful New Year.

Christmas can be a difficult and challenging time of year for some, and our thoughts are especially with those facing such circumstances ❤️

🎄It's that festive time of year again - it seems to come round quicker with each passing year!

Today we paid our annual visit to
Frossard Ward to deliver some bags of goodies for patients of all ages. It was also lovely to bump into some of Jonah's nurses who took care of Jonah back in 2014 ❤️

Happy "11th Birthday" Jonah!

We are all forever grateful for everything and to everybody who made celebrating the milestones possible ❤️

A desperately ill boy who's just 16 is in dire need of a stem cell donor to give him a 'second chance at life', and now a global search has been launched to help him.

❤️

This time last month we announced the exciting news that the Anthony Nolan Cell Collection Centre is now open and has welcomed the first people to donate their stem cells! Nic Alderson, chief operating officer at Anthony Nolan, was on BBC Breakfast, and talked through the process of donating at the new centre. Creating 1,300 new donation slots a year, the centre will help more people across the UK donate their cells to patients in need, giving them more time with their loved ones. Find out more: https://bit.ly/4nvUPXm

🙏

Today is September 24, 2025, aHUS Awareness Day! The awful disease that Jonah got hit with in 2015 shortly after his Bone Marrow Transplant.

This story hits close to home, it happened in Sark. It's such an ultra rare disease that there is only around one new incident of aHUS per two million people every year.

Thankfully the swift actions of the Sark Dr, volunteers and medical services got Deborah where she needed to be to receive lifesaving treatment. ❤

How one of the world's rarest diseases left Sky's Deborah Haynes critically ill Sky's security and defence editor was left fighting for her life after falling ill with an ultra-rare condition. Today, on aHUS Awareness Day, Deborah Haynes shares her terrifying story - and how the "heroic" efforts of medical teams helped save her from herself.

Why signing up and being on the register is so important and can be life saving. It's a simple process. We are eternally grateful to Jonah's donor for doing just that.

Only 7% of eligible people in the UK signed up, her family is pleading for more people to join the register and give patients like Heidi the best chance of survival. ❤

SHEFFIELD GIRL, 9, IN URGENT PLEA FOR STEM CELL DONOR AFTER CANCER RELAPSE

The family of nine-year-old Heidi Howson from Sheffield is making a heartfelt appeal for a stem cell donor after her rare blood cancer returned.

Heidi was first diagnosed with acute lymphoblastic leukaemia just before her sixth birthday and endured more than two years of gruelling chemotherapy, immunotherapy and a clinical trial before ringing the end-of-treatment bell in November last year.

Tragically, Heidi’s cancer has now relapsed, and doctors say a stem cell transplant may be her only chance of recovery. None of her relatives are a match, so she urgently needs a donor from the national stem cell register.

With only 7% of eligible people in the UK signed up, her family is pleading for more people to join the register and give patients like Heidi the best chance of survival.

For more information about how to join the register, visit:
👉 Anthony Nolan – https://www.anthonynolan.org
👉 DKMS UK – https://www.dkms.org.uk