Support Matt & Tarni during Eli’s genetic journey

Hello! My name is Jacinda and I’m starting this Go Fund Me to support my friends Matt & Tarni while they go through a difficult, challenging and unknown time ahead with their baby boy. Matt and Tarni are the type of friends who are always there. Whether you need a babysitter, help with moving or just someone to chat to - you can always count on them. But now they are the ones in need of help. Let me tell you about their baby boy, Elijah (Eli for short).

Elijah Kenneth Keily was born on the 6/6/2022 at 1.56pm at the Wesley Hospital, Auchenflower. When Tarni was 26 weeks pregnant with Eli her obstetrician Dr. Matt Smith noticed that his growth had slowed down significantly and that he was either a tiny baby or that she had intrauterine growth restriction. Tarni had monitoring every week ongoing after that and she was told to prepare to deliver early if he wasn’t progressing. From there he followed his own trend line anyway below the 2nd percentile. At 32 weeks Matt and Tarni made the decision for her to stop working as a full-time teacher and she went onto relief work at 34 weeks. At 35 weeks it was decided to deliver at 37 weeks and 2 days, it was pretty exciting for them to be able to have a designer birthday.

When Eli was born they were told because of his size he needed to go into special care, and they were totally expecting that, they had been very well prepared on what to expect post delivery from Dr Smith and they were confident that a couple of weeks in special care would fatten Eli up and then they’d be able to bring him home.

They got to day three and had no meconium yet and when it did come it was not ordinary at all. So then came the start of the testing for Cystic Fibrosis. Eli had so many tests in the first three weeks of his life which was quite shocking to Matt and Tarni. The main test that showed them something was a faecal elastase test which showed that Eli’s body was not breaking down the fats and proteins in the milk and that there was a lack of digestive enzymes present. They started to treat him for Pancreatic Insufficiency by giving him Creon which is an enzyme replacement. They saw an almost immediate response to the Creon, he started to gain weight, he did less poo’s and they were different to before. After almost 5 weeks in the special care nursery Matt and Tarni finally brought Eli home.

Since being home they’ve really had to learn everything themselves with regards to his Creon and managing his pancreatic insufficiency and it wasn’t until they started to use the public system at the Childrens Hospital that they began to get answers.

On Thursday (20/10/22) at 7.45pm Elijah had a temperature of 38.7 so Matt and Tarni gave him some panadol and brought him up to the Queensland Childrens (formerly the Lady Cilento). He was taken straight into emergency and they put a cannula in and took bloods and a whole range of other tests done, including a lumbar puncture, to rule out different viral infections and those types of things.

He does have Rhinovirus but it was only detected on Saturday (22/10/22), he had no symptoms from it on Thursday and they don’t think that is what caused the fever. They did find that he was severely anaemic from testing done on Friday morning.

On Friday (21/10/22) they did a bone marrow biopsy and skin biopsy and his red and white blood cells were extremely low and with that they have started treating him for the genetic disorder Shwachman-Diamond Syndrome which is is a rare genetic disorder with multiple and varied manifestations. The disorder is typically characterized by signs of insufficient absorption (malabsorption) of fats and other nutrients due to abnormal development of the pancreas (pancreatic insufficiency) and improper functioning of the bone marrow (bone marrow dysfunction), resulting in low levels of circulating blood cells (hematologic abnormalities).

He is quite unwell and they actually thought they were going to lose him on Saturday 22/10/22 and they were fearing and trying to prepare for the worst. He had temperatures all day that wouldn’t break with panadol or neurofen and it was very very scary. He does appear to have turned a corner overnight with no more fevers but they will be in hospital for a while now as they wait for further genetic testing and results.

Tarni had just started working a job during the hours of 2am-6am which Matt was also going to work alternative shifts with Tarni, while Matt completes his university studies and they raise Eli together. They had also just started the enrolment process for Eli into daycare a couple of days a week so that Tarni could pick up some relief teaching work too. Unfortunately now Eli is in hospital for some time, it could be many months and Tarni or Matt have to take turns being with him 24/7. It is not currently sustainable for them to work during this time while Matt is also completing his university degree. If you can help this family in their time of need by taking some of the financial pressure off, please do.

I am also hoping by creating this Go Fund Me that we can bring awareness to lesser known genetic disorders. Right now we are solely focussed on Eli but in the future we hope to find a way to bring further awareness and support research because no baby should go through what Eli is going through and no parent should have to watch their baby go through it.