Real Voices

Real Voices

Matthew

Matthew, now two years' old, was diagnosed at four months with a rare liver disease, alpha-1 antitrypsin deficiency, following weeks of exhaustive tests.

Natalie says: “Early on we had a real fight to get Matthew diagnosed and a clear treatment plan identified. He was heavily jaundiced and stopped feeding. Our GP and Special Care Baby Unit didn’t perform the necessary tests despite our requests. It was heartbreaking to see him declining. Our health visitor was simply amazing; she fought to make sure Matthew got the attention he needed.”

CLDF’s Yellow Alert campaign promotes the early diagnosis and appropriate referral of liver disease in newly born infants. The advice is backed by key professional bodies as well as the three supra-regional paediatric liver units in London, Birmingham and Leeds.

Natalie continues: “I support the campaign as it’s vital that neonatal liver disease is identified and treated as early as possible. Because of this parents and parents to be must know the signs and symptoms and know what to do next. CLDF has created guidelines and an information pack to help healthcare professionals and the general public spot the signs and symptoms of childhood liver disease and I’m proud to do what I can to raise awareness about this vital work.

“CLDF's Yellow Alert campaign is so important to me because of the excellent care Matthew had as a result of our health visitor’s knowledge. I want this to be the case for more and more families across the UK.”

And when asked why she supports CLDF, Natalie’s response comes quickly: “The Foundation was a lifeline to my family at a time when I felt powerless to help my child. Fundraising for CLDF is a way for me to give something back to a really good cause, to say thank you.”

Natalie will be parachuting through the skies of Northamptonshire in July, as she takes on a real challenge to raise funds for CLDF. She says: “Matthew requires incredibly careful nutrition and care; he has regular checks at King’s College Hospital in London. But he never complains; it will be him I’m thinking of when I get nervous in the plane on the way up. I won’t bottle out!”


To find out more visit www.childliverdisease.org/education/yellowalert

To fundraise in aid of CLDF call/text 0121 212 6022 or email fundraising@childliverdisease.org

Esmé

Esmé was diagnosed shortly after birth with the rare and life-threatening liver disease biliary atresia which causes irreversible liver damage. At just thirteen weeks old, Esmé braved hours of surgery to correct the condition, but although the operation was initially successful Esmé’s liver was so damaged her only chance of survival was a liver transplant.

Judith continued: “Esmé was on the high dependency ward at King’s College Hospital, London and desperately needed a transplant. Knowing that was her only option was terrifying, we were consumed with worry for our baby. At that point CLDF staff visited us in hospital, gave us advice and really listened to our concerns; it was a real lifeline.

“We knew a liver became available when we walked in on our consultant measuring Esmé’s stomach for the procedure! After the surgery the change in her was incredible; within three days she went from being lifeless to starting to play and laugh. It was like magic.

“Instead of worrying about Esmé surviving we celebrated Christmas together as a family. Now Esmé has medication twice a day to help her liver do its job but she’s a normal girl. She loves swimming, ballet and is really enjoying school.”

“We usually celebrate the day Esmé had her liver transplant; Esmé calls it her ‘liver birthday’!”

Catherine Arkley, chief executive of CLDF, added: “It’s fantastic to see Esmé doing so well after her transplant and living life to the full. Her story highlights the turmoil families go through when they learn their child has a life-threatening liver disease, but CLDF responds immediately with information, advice and support.

“At least two children a day are diagnosed with a liver disease in this country, which is more than childhood leukaemia, so the need for CLDF’s work is growing.”