Real life stories in the news

Here we post stories about families affected by primary immunodeficiencies that appear in the UK press.

Don't hesitate to let us know if your story is featured in your local or national paper.

May 2015

Student meets Newcastle mum who saved his life twice by donating bone marrow.

Patrick had two bone marrow transplants to treat his CD40 ligand deficiency. Read his story of tracking down the donor who saved his life in The Chronicle.

March 2015

Six-year-old Honey back with friends after life-saving bone marrow transplant from her three-year-old brother.

Honey had a BMT to treat her chronic granulomatous disease. Read her story in the Eastern Daily Press.

December 2014

Schoolboy with NEMO sets off for Lapland

James has NEMO and was diagnosed when he was 18 months old.  Read about his Xmas adventure here

November 2014

Sunderland teenager Ellie, who has IgE deficiency, nominated for Student of the Year. 

Read Ellie's story here.

June 2014

Breakthrough in genetic cancer condition

Watch the Granada TV coverage of advances in the diagnosis and treatment of a rare immunodeficiency that causes cancer with an interview with Dr Arkwright from the paediatric immunology clinic in Manchester and what this means to two families affected by PID.

Girl saves six-year old sister from rare immune disorder with transplant

Read about Kacey Smith who donated bone marrow to her sister Milly who was diagnosed with chronic granulomatous disease. Their story featured in the Telegraph national newspaper.

'Superhero’ aged six donates bone marrow to his brother

Read about Herbie's BMT to cure his immunodeficiency NEMO and his brother Rufus who donated bone marrow to help save his life. 

February 2014

Rare Diseases supplement in The Independent - Deborah Lowe talks about how her family overcomes the challenges posed by her son Henry’s PID.

Henry first became ill aged 5 months with what was believed to be a mild lung infection. But he deteriorated rapidly and was transferred to the intensive care unit in a critical condition. Whilst in hospital, Henry’s grandparents noticed that his symptoms were similar to those of their son who had died 25 years earlier, aged one, of a rare genetic condition. This was a vital breakthrough for the medical team, who went on to diagnose Henry with a primary immunodeficiency disorder.

You can read more about Henry's story here.

Bone marrow donor sought for child with STAT-1 deficiency - a rare primary immune deficiency.

Read the story of Tia Pugh, from Worcester, who needs a life-saving bone marrow transplant because she has a rare form of immune deficiency as well as a tuberculosis-like illness.

December 2013

Sam's life-saving BMT

Read about Sam and his brother's life-saving Christmas present of bone marrow to treat his rare immune deficiency.

Bone marrow wish for boys with CGD

Read about Euan and Arran's hopes for a BMT match for the primary immune deficiency Chronic Granulomatous Disorder (CGD).

October 2013

Mother of an 11-year-old boy is determined to raise awareness of primary immunodeficiency in an attempt to help others cope.

Toby Herbert, from Crawley Down, was just seven years old when he was diagnosed with primary immunodeficiency (PID). His mother, Jo, has to inject him weekly with an immunoglobulin solution called Subgam - an infusion of antibodies which are delivered via two needles inserted in his abdomen. Read the story of Toby and Jo and how they want to help other families.

'Henry makes new friends battling his rare condition'

Read about eight-year-old Henry Lowe from East Markham meeting other children with primary immunodeficiency for the very first time at a family day event organised by Great Ormond Street Hospital (GOSH) Immunology Team and sponsored by Primary Immunodeficiency UK.   

Zara's story

Zara Albright was diagnosed with SCID at 8 months old and received a bone marrow transplant aged 3 at the Bubble Unit at Newcastle Children's Hospital. Now 21 years old she tells her life-changing story.

July 2013

'Stay positive': Michael's message about living with a primary immune deficiency featured in The Independent.

Michael has Wiskott-Aldrich Syndrome. He says ‘ “It’s important to stay positive and not to let your condition stop you achieving your full potential. I missed lots of school and university through illness but I asked for help and caught up.' You can read his inspirational story and how he lives life to the full here.

Baby receives gene therapy for SCID

Read the story of baby Nina Warnell who had gene therapy at Great Ormond Street Hospital to treat her Severe Combined Immunodeficiency.

June 2013

Do you catch every bug going?

Read Mrs Margaret Bennett's story about her diagnosis of CVID in the Daily Mail