Brave Leighton Buzzard boy with FOUR rare conditions was a mystery to medics

Arlo
Arlo

A Leighton Buzzard toddler who is fighting not one, but four rare conditions, has inspired his family to hold a fundraising day for the hospital close to his heart.

Arlo Sawyer-King, who turns two tomorrow, was diagnosed with Panhypopituitarism, a condition meaning his pituitary gland does not function as it should, unable to control Arlo’s hormones.

Arlo soon after being born

Arlo soon after being born

The condition also carries with it three other rare conditions: Hypothyroidism, Optic-Nerve Hypoplasia and Septo-Optic Dysplasia, meaning brave Arlo has no vision in his left eye due to his optic nerve being underdeveloped, while he has to have a daily injection to help him grow.

Now, family and friends are rallying round to hold a family fun day on Saturday to raise money for Great Ormond Street Hospital (GOSH), a beacon of hope that has helped Arlo’s family through the tough times.

Arlo’s mum, Laura McAdam, of Oakley Green, said: “Arlo was born 10 days late at Luton and Dunstable University Hospital. We were expecting a normal delivery, but Arlo was born unable to breathe unaided.

“He was quickly resuscitated and rushed to NICU where he was diagnosed with Pulmonary Hypertension of the heart and went on to spend three days on life support; I only got to hold him for a few seconds before he was rushed to intensive care.

Arlo on one of his many visits to Great Ormond Street Hospital

Arlo on one of his many visits to Great Ormond Street Hospital

“However, once Arlo was ‘better’ from that condition he couldn’t hold a temperature and had to wear a hat and gloves, referred to by all nurses and doctors as ‘the mystery baby’. No-one could work out why he was so unwell.”

Unable to go home, and after weeks of tests, Arlo went for an MRI scan, which revealed that the optic nerve in his left eye was undeveloped, and by three to four weeks old doctors were finally able to diagnose him with Panhypopituitarism - which not even Arlo’s GP had heard of!

After the diagnosis, Great Ormond Street Hospital stepped in, and Arlo visits every three months to have tests and check his medication is on the right doses.

The courageous tot’s conditions have caused him to have a growth hormone deficiency, so Arlo still is unable to walk or stand unaided due to having Hypertonia (weak muscles), while even a common cold could be life-threatening.

Arlo with all his siblings when he first came out of hospital. From left to right: Mason, Summer, Arlo, Ashton & Molly.

Arlo with all his siblings when he first came out of hospital. From left to right: Mason, Summer, Arlo, Ashton & Molly.

However, determined Arlo has regular physiotherapy and a walking aid - like a mini zimmer frame - and his family hope that soon he will take his first unaided steps.

Laura, who works at Centre Parcs, Woburn Forest, said: “Great Ormond Street Hospital along with Luton and Dunstable University Hospital provide the care Arlo needs to maintain a stable life.

“They help in every way possible and they will continue to for all his life.

“We are fundraising to give back to GOSH for everything they do for Arlo and every poorly child they get through theirs doors.”

The fundraising day will be held on August 19 at Brooklands Club, Garden Leys, from 11am - 3pm.

Laura’s friend, Laura-Jane Latto, said: “Georgina Pantling, Laura McAdam, and Arlo’s dad, Brett King, are holding a fundraising day for Arlo, who inspired it all.

“What Brett and Laura do for Arlo is amazing.”

The family fun day will feature a bouncy castle, soft play, and cake and biscuit decorating, as well as leaflets informing people about Arlo’s conditions.

There will also be a raffle, with prizes from kind local businesses including, Rising Phoenix, 360 Play MK, Linslade Tyres, Leighton Buzzard Railway, Rare Beauty, Steakout (Luton) and the Axe and Compass.

Arlo is also coming to the fun day for his special hospital, and will especially enjoy all the music!

His mother, Laura, concluded: “Considering what Arlo has been through and goes through on a daily basis, he’s the happiest child - he really is.

“He’s never miserable and he’ll give hugs to anyone even if he’s never met them before.

“He likes singing and is always dancing. He’s amazing.”

> https://www.justgiving.com/fundraising/littlebylittle2017