• How To Help

    BECOME AN ORGAN DONOR: Organ donation is the ultimate gift of life We have seen first hand what a huge difference transplants can make. Many children and adults are currently waiting for this ultimate gift, but the sad truth is, that many of them will die before they get that chance. Last year, almost 500 people died waiting – there simply aren’t enough donors. Please think about organ donation, and discuss it with your family and friends.Please click here to sign up to the organ donor register. GIVE BLOOD: Daniel had hundreds of life-saving blood transfusions throughout his short life. You too can be a life saver – learn more…

  • MVA

    Microvillous Atrophy (MVA) (sometimes also know as Microvillous Inclusion Disease) is an extremely rare genetic intestinal disorder, in which the bowel is unable to absorb any nutrients from food.  It is a catastrophic condition, which is both difficult to diagnose and complicated to manage.  Patients with MVA are unable to eat normally and are therefore totally dependent on being fed intravenously with TPN (Total Parenteral Nutrition). However, over time the use of TPN can cause damage to the liver, and the central line (known as a Hickman Line) through which the TPN is administered is prone to infection, often leading to sepsis. Consequently, the long-term outlook for children being treated…

  • Making It Better

    We set up our Charity, Making It Better – The Daniel Courtney Trust, in June 2005 in memory of our son Daniel, who suffered from Microvillous Atrophy – an extremely rare genetic disorder of the bowel. Microvillous Atrophy is a devastating condition which is little known and little understood. The gene responsible for MVA (MYO5B) was isolated as recently as August 2008, and as a Charity we are now concentrating our efforts on funding research into finding a cure for this rare condition. To date we have raised over £35,000 thanks to the generosity of our supporters. Our son Daniel was a huge inspiration to everyone who met him. He…