Asher is calling his troops to raise money for Just4Children to provide his private rehabilitation sessions.

Asher Our Miracle Heart Warrior is aged 14 months from Liverpool. He was born with a very rare heart condition called Truncus Arteriosus which wasn’t picked up on scans.

On the 19th of April, Asher (11 weeks old) was taken to A&E as his lips were blue and he was breathing fast. At Arrowpark he became very poorly, very quickly. They saved his life! When they had stabilised him, he was quickly transferred by ambulance to Alder Hey Hospital. We were told they didn’t know if Asher would make it 12 hours.

To make matters worse he also had Covid, but needed emergency surgery to limit the blood flow going to his lungs. He underwent the first part of surgery but it didn’t have the outcome the medical staff were hoping for. Asher needed the main surgery to fix his heart although they thought he was too weak to have it at this point.

After months on the ventilator, blood transfusions, sedations, drugs and 24/7 care in the intensive care unit, a second opinion from the heart specialist hospital in Newcastle was needed to see what to do next as Asher was deteriorating. They performed the main surgery in June, with a high risk that Asher would not make it through the surgery or then through the first few days and weeks of recovery. Over 12 hours later in the theatre he pulled through. The longest day of our lives! He came off ECMO the bypass machine, then pacemaker, then fluid balance. Then, thank God for the ventilator. He started to breathe on his own for the first time in 14 weeks.

He started putting weight on and weaned off sedations and medicines. He pulled through it all!

After 100 days to the day, 2 major heart surgeries, ventilator, ECMO heart bypass, oxygen, sedations, medications, wobbles, scares, sleepless nights, living at Alder Hey, Ronald Macdonald, we were told we could take him home!

We had 2 lovely weeks at home in our little bubble before Asher started to have these episodes where he would go blue, struggle to breathe and then would go limp. We called the ambulance out a few times and had a few scary trips to Arrowe Park. We spoke to Asher's cardiac team at Alder Hey and they admitted him straight away. He had a virus which was made worse by his complex history and low immune system. We were discharged from Alder Hey on Friday 25th August. Then on Monday 28th August there was another scare and, as John went to do CPR, the ambulance came.

We went back at Alder Hey where Asher is well known. They carried out a Bronchoscopy where they discovered he had scar tissue and trachea damage from the ET breathing tube and Covid. He had a procedure which took his 3mm trachea to a 5mm. It Should be 6mm. Asher was then back on the ventilator to give his lungs a rest. Unfortunately, the procedure for Asher's trachea was not successful. Asher’s trachea had retracted back to 3mm. He wasn’t expecting that to happen so soon! It was stretched again to 7mm in an emergency as Asher was struggling to breathe and said he wouldn’t ‘last’ over the weekend if he didn’t try!

Unfortunately, Asher was still struggling to breathe so they transferred Asher by helicopter on the Sunday to GOSH for more procedures and possibly surgery. Thank God he had a bed and they have a room for us whilst he’s in ICU. They did the first procedure on the Monday and checked him the week later. They were happy that the procedure had been successful.

On Tuesday we came back from GOSH London to Alder Hey via ambulance through the night for recovery. Unfortunately, Asher had another blue episode on the following Saturday even with the repaired tracea. He was moved back to the ICU on the ventilator. However, he had an episode on the ventilator probably due to him being weaned off the drugs. Because Asher had poor access to veins and arteries due to a life in ICU and ECMO they decided they needed to put a broviac tunnel central line in through his liver.

A few days later Asher was discharged from Alder Hey but a few days later we had to call for another ambulance to our home, and we were taken into Arrowe Park. He had sepsis in his broviac tunnel line. This nearly killed him.

After another very scary time in Arrowe Park when they didn’t know if Asher would make it. The Newts team managed to stabilise him and he was blue-lighted to Alder Hey. On this admission, he had lost the ability to move his left side, even his smile. They did an MRI Brain scan. The neurologist told us the worst news we could hear after everything Asher’s already had thrown at him. He now has had a stroke and has severe brain damage which could mean cerebral palsy, seizures and epilepsy in the future.

We have always joked about moving closer to Alder Hey but we thought it through and after bad experiences and Arrowe Park saying Asher’s condition was too complex for them, we decided the move was needed.

We were discharged from Alder Hey in late November and moved into our new home trying to create nice new memories especially being home for Christmas. We were home for 5 precious weeks but then on New Year’s Eve Asher was struggling to breathe. We drove 3 minutes to Alder Hey A&E and were admitted for 3 nights where he had 3 viruses.

We had a week back home including getting home for John's birthday. Then soon after Asher started being sick. We took him back to Alder Hey where his sick became dark green. Many tests including all tests an ultrasound scan were carried out. The results showed that he had scar tissue from his abdomen surgery in June. (During heart surgery). His small bowel was narrowed, so they needed to cut the narrow part out and remove scar tissue. We prayed for no more scar tissue to form.

Asher seemed to of coped well with surgery. However, Asher being Asher we were back to HDU on oxygen after a few too many scary turns where he would scream in pain and then couldn’t catch his breath.

Finally, we’re back home we’re we belong!

Asher has regular appointments as he’s under 3 teams at alder hey. Spending most of his life on ICU we are obviously delayed with a lot of milestones. At 14 months he’s still not able to sit up alone or crawl, roll etc. he’s still not as active with his left arm and holding his thumb in (after the stroke). We are keen to do as much as we can so with regular rehabilitation sessions with therapists at the private clinic blue skies offering all different types of therapy treatment to encourage movement, brain stimulation. Also, physio and occupational therapist from Alder Hey. We are also on the waiting list for hydrotherapy. We have a wheelchair and high chair to help with his posture. We are still waiting for an appropriate bath.

Alder Hey children’s hospital have been incredibly supportive and literal life savers throughout this journey but unfortunately the care Asher now needs in rehabilitation support is private and therefore comes at a cost.

Since the start of this journey people have been so supportive and generous. Thank you to everyone who has supported us through this horrible never-ending situation. We are truly grateful and so blessed to have you and the NHS. I honestly don’t know how we would have come this far without the love, help and support from our Church families, friends and God.