Hi our names are Megan and Anthony. We are raising money to purchase a wheelchair accessible van. We are so excited for the adventures with Lillie-Ann and this van will make it possible, but we need your help. For those of you who don't know about us and our family. We have 6 kids, and are a big blended family. We currently have two 5 seater vehicles, neither can be equipped for her wheelchair. Children's Disability Services will pay for the adaption of the van but we first need the vehicle, or we can purchase a wheelchair adapted vehicle. We want something that will last a long time, because Lillie will be in this wheelchair for many years to come, if not for the rest of her life. Lillie-Ann was born with multiple medical conditions, Septo-Optic Dysplasia, Quadriplegia Cerebral Palsy, Polymicrogyria, she is completely blind with no light perception, & she is globally delayed.
If you’re able, please consider donating it is greatly appreciated, and every amount no matter how big or small will make a great impact.
We are currently looking to purchase a van that already is adpated! All donations are greatly appreciated. You can also follow Lillie's story, and journey on our Facebook group Lillie-Ann's Journey.
We are hoping to have a vehicle purchased by August 15th 2022.
Here is Lillie-Ann's story:
Lillie-Ann was born with congenital birth defects. We found out when I was 28 weeks pregnant, during a fetal assessment appointment. As they were doing imaging of her brain. We already knew from my other pregnancies there was a very good chance she would be premature. So around 29 weeks I was given a course of steroids for her lungs, and then again at 31 weeks. I went into labor the first time with her at 31 weeks and 3 days, but the nurses were able to successfully stop my labor in hopes she would stay in a little longer. So on June 1st 2019, at 33 weeks and 3 days, my water broke. While in triage, the NICU doctor had come in to tell us, once she was born she would be transferred to Children's Hospital and I would need to stay at St.B. We were not okay with this. After a lengthy conversation with the NICU doctor they agreed to admit Lillie-Ann to the NICU at St.B.
Lillie-Ann's birth was perfect, the C-Section went smoothly, she came out crying, & she even peed in me the moment they pulled her out.
They checked all her vitals, cleaned her up and I was able to hold her for a few minutes before they took her to the NICU.
Lillie's first few days in the NICU were hard. For her, for us, just in general. We had so many questions, and very little answers. We knew once she had an MRI, a lot of our questions would be answered.
So when Lillie was 5 days old, she went for her Brain MRI. The results of her MRI showed she was missing her Septum Pellicidum (midline part of her brain), and her optic nerves were hypoplastic (abnormally small). We received a diagnosis of Septo-Optic Dysplasia which is Lillie-Ann's main condition. Lillie is completely blind with no light perception, which means she cannot see anything not even a little bit of light. During her NICU stay Lillie-Ann really struggled with feeding, was fatigued quickly, and would vomit viciously. They ended up putting in an NG Tube (Nasogastric tube), to help get food into her and help her keep it down. The NG did help greatly. After Lillie-Ann was discharged from the NICU, we ended up admitted in Children's Hospital on 3 different occasions all before the middle of August 2019. We made a decision with the team of doctors to have a G-Tube (gastrostomy tube) placed, as we determined this was going to be needed long-term. She had the procedure August 26,2019.
Fast forward to October 2019, Lillie started making these frequent movements that were worrying us. Her whole body would tense us then release and repeat, over and over sometimes for hours. Finally within a few days she was diagnosed with Infantile Spasms. They started her on anti-epileptic medication, which seemed to work almost instantly to control the seizures. January 2020, Lillie had her first focal seizure. This was the scariest thing we had ever experienced. She was rushed to Children's Emergency, and then started on another seizure medication. April of 2020 Lillie then had her first Tonic Clonic Seizure (Grand Mal Seizure), we administered her Lorezapam (seizure rescue medication) and called 911. After speaking with Neurology, given all the different types of seizures she was having even though she was on the anti-epileptic medications she was diagnosed with Drug Resistant Epilepsy.
Months later, Lillie was seen by more specialists, had more tests, and we got more answers.
Lillie was admitted to Children's Hospital again March of 2021, where they ran alot of tests, MRI, CT, Ultrasound, etc,. She was given a few more diagnoses. During Lillie's Brain MRI March of 2021, they found she had 2 cysts in her brain, that would need to be closely monitored. She also was diagnosed with Bilateral Polymicrogyria (multiple unusually small folds in the brain). Just a few months later Lillie had seen a specialist where she was Diagnosed with Cerebral Palsy. (Spastic Quadriplegia). Once we received the CP diagnosis we advocated and we're approved for her wheelchair! Which we received Decemeber 23 2021.
Thank you for reading!