Amelia Matters

Amelia Hine was born with a very rare and complex heart condition.  She was born with only half a working heart, a condition known as Tricuspid Atresia, VA concordance with normally related great arteries. She has many other congenital heart defects to go with this, Atrial septal defect, ventricular septal defect. Narrowing of the pulmonary arteries.  The list goes on. 

Amelia’s parents started the charity Amelia Matters in 2011 and have since supplied 200 warfarin machines to families with children with congenital heart disease, and organised many support group meetings and meet up events.  

We’re proud to raise funds for their cause.

Latest update 

“The last 18 months the cardiac team who care for Amelia in the Childrens Cardiac Unit, Noah’s Ark hospital, have been concerned over her poor cardiac output, in turn she has in this period attended 40 clinics.  More recently she has developed a condition known as bradycardia (a dangerously low heart rate), which in turn has caused problems with her right atrium, it has lost its natural pacemaker to the heart.

She struggles with day to day life and has not attended many days in school this term.

On the 13th July, we travelled up to The Evelina Childrens hospital at Guys & St Thomas in London.  She spent an hour and half in an MRI machine taking images of her heart with dye injected in through her arm.  She also had to take a treadmill test.  Amelia coped so well we were so proud of her.  We are currently awaiting the results.

Amelia is trialling two new medications, one to keep her heart beating and another to bring her very low blood pressure up.  Both are giving her a small boost but they are not sure how long she will sustain this.  We will take this for now if it gives us 4 more months we are grateful.  Any longer is a huge bonus.  She also takes warfarin which is a blood thinning drug along with 3 others twice daily.

Paul and I have 5 other children and normal life is something we try very hard to keep going in our home.  The youngest of our children, Noah age 5 and only recently realised that Amelia could die with her heart condition.  It effects all our children in different ways and supporting them all is a challenge but one we do without question.

We have support with the younger children’s school which is a godsend. Phoebe is 8, she attends The Angel School of Dance, she has recently taken her grade II ballet and primary tap, which she was very focused on despite everything happening around her.  We are very grateful for the ongoing support from Miss Angela and Pat, their emails and coffees are invaluable.

Paul and I started our charity Amelia Matters 6 years ago, we have since supplied 200 warfarin machines to families with children with congenital heart disease, and many support group meetings and meet up events.  We can only carry on with the help of fundraising for our charity.”