Help for Ava-Grace

Ava-Grace Makasini

Born in November 2013 Ava-Grace Makasini is a beautiful little girl with an infectious smile. However, at just over two years old she has been through more pain and sickness than most of us experience in a lifetime. Ava-Grace was diagnosed with Megacystis microcolon intestinal hypoperistalsis syndrome or MMIHS. This is a rare congenital disease with 71% of patients being female. Her abdomen was distended, her colon is very small and she has little to no intestinal movements which means she is unable to eat in the traditional way and must rely on a feeding tube and parenteral nutrition.

At just a few days old she underwent the first of a series of operations to try and correct her condition. Having thought that she was getting better the doctors’ allowed Ava-Grace to be fed a few mils of milk every few hours but after doing tests it was found that the milk sat in her stomach and wasn’t moving through her digestive system and so she had to undergo another surgery to try and find the blockage.

By the time she was three months old she had undergone four major operations. The fourth was to connect her bowels to her stomach to see if she could digest her food that way. After this operation the Makasini family were able to take their baby girl home for short visits. By March 2014 Ava-Grace was going in for her sixth operation as doctors continued to try new ways that would allow her to process food naturally. In the mean time she was given a Hickman line so that she could easily be given her medications

After six months in Starship hospital Ava-Grace was able to go home with her family. However, she was in and out again with fevers, dehydration, and cultures positive for infections. Despite this she has beaten the odds and is thriving and growing stronger, with only a few bumps along the way. Multiple infections have meant that Ava-Grace is still being admitted into hospital every few months so that she can be given medication and looked after by the medical professionals there.

By January this year she has endured sixteen major operations on her digestive system and to replace lines that help when she is admitted to deliver medicine into her system so that her body can fight the many infections and fevers she contracts. In February she went in for another operation on her bowel to try and repair it and is now back home with her family and doing well for now.

Long term her outlook is uncertain - her parents have been advised that a bowel transplant may be the next step in her treatment. Ava Grace will undergo assessment by a special team from Melbourne Children's hospital . If Ava Grace is accepted for transplant her family will need community support for the long period she will be hospitalized overseas. KIDS Foundation is assisting by setting up this Give a little Appeal for well wishers wanting to offer support.