Tots show their support in red

Smart Start Preschoolers dressed up in red to support two young brothers who battle the rare blood disorder severe haemophilia A.

Austin, 7, and John Davis, 2, suffer from the disorder which causes severe bleeding.

Mother Caroline Davis said the general perception is that haemophilia is only an external bleeding problem.

"When I'm going shopping and I lift the boys out of the car and his shirt rides up so you can see he is a lot more bruised than other kids people do give me funny looks."

Severe haemophilia A causes serious internal bleeding, often on joints which can lead to scar tissue building up around joints and arthritis.

Anything from going down a slide or climbing over something can leave the boys covered in bruises.

There is no haemophilia centre in Whangarei, so the Davis family had to learn how to administer the medicine the boys need to maintain regular blood results at home.

Austin has an injection directly into his vein every morning while John receives his once a week.

"We need three people when we give John his injection. One person holds him, my husband finds the vein and puts the needle in, and I screw the medicine on and make sure it goes in smoothly," Mrs Davis said.

Mrs Davis reached out to her friends, who have created a roster to make sure someone is available to help the Davis' give John his medicine each week. That had been a huge help for the family, she said.

Mrs Davis also praised the support the preschool showed their family.

"The awareness here is amazing."

Mrs Davis said there is a 25 per cent chance that the boys will develop a resistance to the medicine in their lifetime.

Yesterday was International Rare Disease Day - held to raise awareness of all rare diseases.

- Northern Advocate

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