Help Baby Ian Battle a Rare Brain Disorder

Support Baby Ian’s Battle with a Rare Brain Disorder

When you are expecting your first baby, you naturally picture how life will be. From the moment you find out that you are carrying your baby, you put that precious life before everything. You think about all the happy and exciting things that surround a new and growing family and eagerly wait for the moment to finally hold your baby in your arms. However, sometimes, that picturesque image is overshadowed by a new reality that consists of medical complications, many unknowns, and an unfathomable sadness.

My name is Elen, and I have chosen to create a GoFundMe to support my daughter and son-in-law, Evy Mallis and Shawn Davidson. On December 27, 2024, they became parents to a precious baby boy named Ian Matthaios Davidson. This new and young family are going through so much and could really use our support.

At 20 weeks, during a routine ultrasound, baby Ian was showing multiple abnormalities of the brain. The entire ventricular system of the brain was abnormal, causing an excess of cerebral spinal fluid (CSF) around his brain, also known as hydrocephalus. The excess CSF caused the left side of his brain to put pressure on the midline falx, which shifted to the right. There also appeared to be an aplastic cavum septum pellucidum, which is a thin membrane missing from its normal position in the middle of the brain. The differential diagnosis included: agenesis of the corpus callosum, septo-optic dysplasia, and other dysfunctions of brain development. The doctor gave little to no hope to Evy and Shawn. They were devastated, and their joy to be expecting turned into a heaviness knowing that they were going to bring into the world a baby with lots of medical and special needs, if he would even survive birth. Their love was so great for their unborn baby and refused to give up on him.

What nobody knew is that baby Ian is a fighter! Despite all the odds stacked against him, he continued to grow and boy, did he move around! Evy was quickly referred to a fetal-maternal medicine specialist and a pediatric neurosurgeon in the Dallas-Ft. Worth Metroplex area. Evy went through many tests, including imaging tests. Every appointment was far from home, and both Evy and Shawn missed days of work just to be able to keep the appointments. With all the fetal complications and the gestational diabetes that Evy developed, her specialist recommended that Evy relocate to the Ft. Worth area for the month of December (2024) in case she went into labor. The month away from home was quite an expense. On December 27th, on Shawn’s birthday, baby Ian was born.

Ian was taken to the NICU for observation. He struggled to eat and maintain normal blood glucose levels. A nasogastric tube was inserted, and every 2 hours Ian was pricked to measure his blood glucose levels. Within 24 hours of birth, Ian was taken to Cook Children’s Hospital in Ft. Worth for a brain MRI. The findings are highly suggestive of agenesis of the corpus callosum and callosal dysgenesis. There is moderate ventriculomegaly, which would be concerning for cerebral aqueductal stenosis (hence the build-up of excess CSF around the brain), and a large defect of the left parietal-occipital lobe. Evy and Shawn were told that Ian would remain in the NICU until February for further observation. These new parents were made to feel as if their newborn baby was too fragile to be handled, and they cried. But they quickly picked themselves up and took charge of their baby’s care. They did hours of skin-on-skin time and fed him and held him. Ian responded to his parents and began drinking from a bottle and maintaining his blood glucose levels. When the pediatric neurosurgeon visited Ian, he said if Ian continued eating and maintaining his glucose levels, he could be discharged and go home. On January 1, 2025, Evy and Shawn brought baby Ian home.

So what does all this mean? Agenesis of the corpus callosum (ACC) is a rare brain disorder that varies in severity. Most children with ACC will have developmental and physical problems that will require lifelong medical care and surgery. Symptoms include brain abnormalities like hydrocephalus (excess fluid in the brain), seizures, vision problems/blindness, feeding and swallowing problems, delays with the development of motor and learning skills, and speech delay. There is no cure for ACC. The only thing available is to treat the symptoms. The focus is on preventing medical problems and maximizing Ian’s abilities. Physical, occupational, and speech therapy and early intervention are important in helping Ian develop mentally, physically, and socially. Evy, Shawn, and Ian’s normal will be appointments with specialists, MRIs done monthly to monitor intracranial pressure, therapies, and surely surgeries in the future. This little family has a long and difficult road ahead of them with many medical unknowns, but there is no doubt that they will get through it and find the beauty of parenthood in the smallest of things.

If you have read this far and are still with me, thank you! I am asking on behalf of Evy, Shawn, and Ian for family and friends to not only support these three, but to also consider donating funds to help with medical costs and help with the care of baby Ian. Evy and Shawn are modest, and it took some convincing for them to give permission to start a GoFundMe. They see how big of a blessing this would be for them. They would like to say thank you in advance for your support and generosity.

We are thankful baby Ian is here and showing us what a fighter he is. We continue to have high hopes for him that he will show us how strong he is and that he will exceed the medical professionals’ expectations.

Thank you again and with love,

Elen, on behalf of Evy, Shawn, and baby Ian