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LoveQuiltsUK - Ben M's quilt

Ben M's quilt   (Quilt Coming Soon)

Illness: Noonan syndrome

Theme: Harry Potter

Quilt will open soon, keep checking back!
Photo of Ben M

Child Interests

Ben has a passion for trains, Harry Potter and space and likes the colour blue.


The day Ben was born was when our whirlwind journey began. I had a water birth with him and he required oxygen and suction but we got home with him at 3 days old. At 5 days old he was rushed back into hospital due to a very low temperature and big weight loss. Being my first, I didn't know that him being so sleepy was such an issue but that night he stopped breathing in his sleep. Lumbar punctures, heel pricks, iv antibiotics, jaundice lights, NG tube, oxygen and lots of cuddles were provided by the amazing hospital staff and he was out three weeks later.

Whilst in there, they found out he had a heart murmur and undescended testes and wanted to take bloods to see if there was a reason for all his issues. A little while later, we were told he had Noonan syndrome.

Growing up, Ben has seen cardiologists and endocrinologists every year and currently takes growth hormone injections. These injections have helped with his delayed bone age as well as his growth. He had two small operations to resolve his undescended testes and continues to be seen for his pulmonary valve stenosis.

In 2019, Ben was seen by a psychiatrist for needle anxiety relating to his growth hormone injections. He was then assessed and diagnosed with autism.

At school Ben struggles socially and requires support in the shape of timetables and fiddle toys but thoroughly enjoys maths.

Although he suffers badly with anxiety, he is a happy and lively boy who always faces difficulties head on.

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