Angela Cran
"Keep a smile on your face" on Keir's 18th - fundraising for PHA UK
Fundraising for Pulmonary Hypertension Association UK
Story
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On 16 June, my younger son Keir MacGruer would have been 18, but instead we've been almost 10 years without him. Life goes on for myself, Keir's big brother Finn and their dad Lewis, and we do try to keep a smile on our faces as Keir would have wanted. We have a lot to be thankful for, yet at the same time we feel his absence every day.
Keir was diagnosed with idiopathic pulmonary arterial hypertension when he was five and a half years old, following a much earlier diagnosis of asthma.
Pulmonary hypertension (PH) is a rare and still incurable progressive lung condition. Early symptoms can be similar to and mistaken for asthma, which can lead to delayed diagnosis and a poorer prognosis. PH ranges in severity and some people respond well to medication while others develop right heart failure with a lung - or lung and heart - transplant their last-resort treatment option.
On diagnosis in late November 2009, Keir came under the care of the Pulmonary Hypertension Service at Great Ormond Street Hospital, London, led by the late Dr Ingram Schulze-Neick. We travelled to GOSH many times over the next almost three years, as well as to outreach clinics at the former Yorkhill Hospital in Glasgow.
Keir's local care as well as ongoing liaison with GOSH was led by Dr Reddy at Raigmore Hospital in Inverness. Keir and all of us were also supported by local NHS Highland community paediatric nurse Pat Rankine and her team; Highland Council social worker Fiona Shevill who supports children with exceptional needs; local nursing and family support staff from CHAS at Home (Children's Hospices Across Scotland) in Inverness and a family support worker from Rachel House in Kinross; and our GP Dr Beth Macfarlane of Cairn. The tremendous support of family and friends, including from the boys' primary school BSGI and friends in Feisean nan Gaidheal, also kept us strong and able to go places with Finn and Keir.
Keir's extraordinary artwork helped raise money for the ARCHIE Foundation's appeal to redevelop Raigmore Hospital's children's ward, where his superheroes and other designs can still be seen at the entrance.
To celebrate Keir's 18th, we are supporting the Pulmonary Hypertension Association UK (PHA UK), which also helped us in special ways in Keir's lifetime and beyond.
PHA UK is the only charity in the UK dedicated to supporting people affected by this rare and serious condition. It launched in 2000 and now has almost 4,500 members committed to raising awareness of PH in the hope of one day finding a cure. https://www.phauk.org/
What PHA UK do:
- We support people affected by PH to enjoy a better quality of life
- We raise awareness of PH to encourage understanding and earlier diagnosis
- We provide research grants to academic and healthcare professionals to improve the way PH is treated and managed
- We carry out our own research to understand the needs of people affected by PH
- We organise our own training for healthcare professionals to obtain the specialist skills required to treat people with PH
- We provide a platform for the patient voice to be heard loud and clear
Any small donation you can make to PHA UK in Keir's memory on his 18th birthday will be so much appreciated by us and the charity. Thank you. 💜 xxx*
Read on for the important stuff about Keir's life:
Keir’s life was too short but it was filled with love and laughter, and lots of good times. He became more restricted in what he could do by his condition but he didn’t let it stop him having fun. Things he liked included art, big style; Lego; DVDs, especially Scooby Doo and Lord of the Rings; baking; cooking; watching cooking programmes; hanging out with the boys at Paul and Christine’s; fishing; making scary movies with Rowan and Finn; potions and experiments; the Moon, stars and planets; dressing up; acting; singing; wrestling; light saber battles; sword fights and elaborate war games, especially with Finn and Ishana; dancing; cuddles; fine dining. Presentation of food was important to Keir and he would take a photo of a dish if he thought it was exquisitely laid out. He had the most sophisticated palate in the house, enjoying steak, olives, curry, pasta and pesto and lots and lots of tomatoes at a time.
He also liked food shopping; going to the Floral Hall and the Islands; Waterstone’s and Costas; travelling; visiting museums; going to aquariums; playing the X-box, Wii and DS; playing crazy golf and practising his swing; and board games such as Cluedo, Monopoly, Scrabble, Articulate and Uno.
He loved secretive things like small jewellery boxes, gemstones and scrolls; he loved Eygptian mummies and scarabs, making maps and secret code messages. He loved a good putdown, or rolling his sparkly blue eyes with mock horror. He didn’t stand on ceremony for anyone but was never rude, just astute, honest and funny. If any bad words were overheard by Keir he would shout ‘Language, Timothy!’ at the top of his voice. He didn’t like you to be down. ‘Keep a smile on your face’ he would say, or ‘Give us a smile!’ if you looked really fed up. If you cried in front of him - like I did at the end of Toy Story 3! - he would fetch the tissues, dab your eyes, and give you an enormous cuddle. He had such a strong spirit and we were so lucky to have him in our lives.
Keep a smile on your face for Keir, keep laughing, 'strive to be happy'.
Thank you for reading.
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