My name is Teaira, or Tea as my friends and family call me! I am the momma to a beautiful baby girl named Dakota. She will be having to have brain surgery in November! Here is our story:

From the moment Dakota was born we knew she was going to be special.

She spent 2 1/2 weeks in the NICU. The first week Drs ran test after test to figure out why she was so jaundice. She was on 4 bilirubin lights and a blanket at one time and her levels kept going up. One dr even told me he had no more test to run, and he wasn’t sure what he could do. The next week we got a different dr, he ran special blood test on Dakota. After a few days those test came back, she was diagnosed with Hereditary spherocytosis. This means her blood cells are completely round. She has had multiple blood transfusions, and has to have her hemoglobin checked frequently, as well as her spleen has to be watched. Both of her parents have been tested and neither have the disease. This means she fell into a 1-3% chance of her body mutating it.

Starting at 4 months old Dakota got hospitalised for the first time with rhino virus. She had to be on oxygen. That was in may. Fast forward to September 2024, she was hospitalised for Rhino again. In late October Hospitalised again, and again for rhino. Come December 17, 2024. She was hospitalised again and you guessed it for rhino. But this time was different, this time Dakota was put on a ventilator, after arguing with drs, and pushing to have test done, they finally did a chest CT. On Christmas Eve 2024, the dr come in with some of the most devastating news. Dakota had blood clots in her lungs. So many that the dr told us it would take him over 24 hours to even attempt to count how many she had. Pulmonary embolisms ( the blood clots) are what was causing her to stay sick with rhino and be hospitalised every time she had it. There is also no protocol for Pulmonary embolisms in a child, especially a 1 year old. So after calling the closest children’s hospital for advice. She ended up being on blood thinners for 4 months. We are now running special test to see what could have caused the blood clots.

When Dakota was 4 months old we noticed her eyes didn’t move like they should. After seeing a few drs and running a few test, they did an MRI and found out she had Septo Optic Dysplasia (SOD). To have SOD you have to have 2 of 3 abnormalities.

1 being an optic nerve hyperplasia

2 a brain midline abnormality

3 pituitary glad issues

1 in 10,000 have 2/3

1 in 20,000 have 3/3 Dakota has 3/3

She has Optic nerve hypoplasia, meaning her optic nerve’s did not grown in utero, she is missing the midline of her brain, and she has a growth hormone deficiency. Her parents have been tested for this as well and again she has fallen into 1-5% chance of her body mutating it. They estimate she sees maybe 20%. There is no cure, medication, glasses or surgery that will help this. She has been diagnosed with level 5 blindness

Due to being on oxygen so much and her having low vision, this has also caused her to having trust issues with putting things in her mouth. As of now she is in food therapy, we are working on her eating! She is also in physical and occupational therapy, to help with walking and mobility skills.

Dakota has had Genitics testing done. The only thing that showed positive, she has a gene that can cause her to have seizures at any point in her life, this comes from her dad. As of now that is the only thing that either parent has passed to her. She is a very rare toddler indeed

The MRI also showed something no one expected to see. She has two arachnoid cyst on her brain. After following very closely with neurology, they have decided it will be best for Dakota to have brain surgery to bust these cyst. That is scheduled for November 10th.

At this moment we don’t know how long of stay we will have, the dr has also said this could be the first of several surgery, we know we will be down there 3-5 days and that’s only if everything goes well! Which we are praying it does! It could possibly be longer just depending on what the surgeon sees when she gets inside! The most common risk we have is a brain bleed, if this happens we could possibly have to stay 2 weeks or more! If anyone would like to donate for gas, food for us to eat on or money for a hotel room in case we have to stay longer then expected, it would be greatly appreciated. Me and her dad neither will be working that week and I won’t be going back till the dr completely clears her, we don’t know when that will be. Most importantly please keep us in your prayers, as we travel this scary and new road in our life. Thank you for your thoughts, prayers, consideration and support!

Thank you!