About one in a hundred babies is born with a heart defect.
We are building a fund to help those families reach the care, the supplies and the support that nothing else covers.
The surgeries do not cure them. They buy them a life.
What comes after is decades of monitoring, appointments, travel, missed work and costs that nobody warned the family about. That gap is where this fund is aimed.
The help runs out
at the hospital door
Inside the hospital, families get world-class care. Outside it, they are largely on their own.
A family driving four hours to a specialist pays for the fuel, the parking and the hotel. A parent sitting beside a bed for three weeks is not being paid. Somebody has to look after the other children. None of that is medical, so none of it is covered, and all of it lands on families at the worst moment of their lives.
Research is the other gap. There is very little known about the long-term effects of these childhood surgeries on the rest of the body, or what complications appear in adulthood. The children being operated on now will be the first large generation to find out.
Three things,
to begin with
There is more need in this community than any one fund can meet, so we are starting narrow and doing those things properly.
Warrior Packs
A practical bundle for a family facing a long hospital stay. Specialised clothing designed around scans and monitors, at-home supplies, and vouchers for meals when nobody has the energy to cook.
Family support
Direct funding, released in response to requests from hospitals on behalf of families. Travel to reach a specialist, lodging, childcare for siblings, food and clothing. The things that fall outside what any programme will pay for.
Honest information
What the first years actually look like, financially and emotionally. What time in and out of hospital is really like. Written by families who have done it, for families about to.
Longer term, fundraising will go toward research into CHD patients aged twenty and over, where the least is known and the need is growing every year.
We are not open yet
The organisation is being set up properly, which takes time and is worth doing right. Leave your email and we will tell you the day it opens.
Get one email, when we launch
That is the whole commitment. No newsletter, no campaigns, and your address goes nowhere else.
If you would rather talk to a person about supporting this, or you are a family who needs help, write to team@strongwilledwarrior.com.
Where things stand. 1 in 100 is in the process of being established as a registered organisation. It cannot yet accept donations or issue tax receipts, and nothing on this page should be read as a solicitation. When that changes, the people on the list above will be the first to know.