Story

We are fund raising for The Joshua Lyangh Foundation which was set up by a gentleman called Peter Lyangh and his Daughter Sophie. Sophie and her partner tragically lost their son Joshua in 2016 after being diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Please read below for their full story.

Sophie and her partner found out she was expecting Joshua on May 7th 2015. It was a surprise but one they were overjoyed about.

It was a difficult start to the pregnancy with Sophie, unfortunately, being an inpatient having had a brain haemorrhage on 3rd May 2015. She later had an angiogram on 3rd June to investigate what was happening which resulted in 36hours in hospital due to complications and an incredible scary period for Sophie and the family. However, she pulled through.

Later, following a scan on 22nd Aug 2015, Sophie received devastating news that Joshua's heart had not developed properly, later it was diagnosed as Hypoplastic Left Heart Syndrome (HLHS). At this point the general opinion was to terminate. However, Sophie and her partner were adamant to give their baby every opportunity of life and continue with the pregnancy. She was told she would give birth at Chelsea and Westminster and Joshua would then be transferred immediately to the Royal Brompton Hospital, HLHS specialists.

Sophie knew they had made the right decision when they met with Joshua's surgeon Guido Michielon. He was so pro life and his passion was children’s heart surgery. He said he and the team were there for the very purpose of saving little babies lives, like Joshua. They do phenomenal work.

On Christmas Morning at 11:34am Joshua was born and few hours later Joshua was transfered to the Royal Brompton where he would undergo the HLHS surgeries – Norwood within the first 2 days, Glenn at 6 months and the Fontan upto 3 years .

On day 2 of life, 27th December Joshua had the first stage - his Norwood procedure. This was always the most risky and harshest on the body. Joshua did struggle with recovery but he came through.

Joshua was an incredible size for a heart baby and was able to have his second stage earlier than normal, which was lucky has his body started to struggle. On 20th April Joshua had stage 2, his Glenn. We were astounded just how quickly Joshua recovered. Days after having it he was back to his smiley little self.

We were finally able to take Joshua home on 5th May.

Following a cardiac arrest Joshua returned to Brompton where he was stabilised and spent a further 2 months in hospital. During this period Joshua suffered further cardiac arrests but he clearly was not ready to leave us.

Joshua came home again on 29th July and he continued to improve and generally loved life. He rarely cried, only if something was really wrong. He had such strength and bravery. The sheer determination, love and fight he had was so incredible. Joshua had a smile that made any bad day or situation fade away. Joshua fought a hard fight at every step of the way but with a smile and sparkle in his eye. He was so full of life, joy, happiness and love. He was full of character and such a cheeky little boy.

On 26th September Joshua had no fight left and passed away.

At this point I held Joshua in my arms and promised that his legacy through his inspiration would be to support other children with HLHS to have longer and happier lives. My promise was to set up the Joshua Lynagh Foundation Trust.

Our aim is to raise as much money as possible to supply grants to Guido and his team for research and equipment to continue to provide longer and happier lives for children with Hypoplastic Heart conditions.