November 15, 2020

Meet Blakely – 2020 Memorial Princess

Memorial Princesses

Memorial Princesses

Blakely was actually nominated three times!!

Her first nominator Megan writes “Blakely Rose is a 3 year old with PVL, Cerebral Palsy, VHL, chromosome deletion at 3p25.3, Amblyopia and Cortical vision Impairment. Blakey had a stroke in the womb and has several genetic impairments. She’s the sweetest little girl, and LOVES music. She’s mostly nonverbal, but does know some sign language. She’s in therapy multiple times and week and constantly at the doctor to find out more about her condition. Her condition means she is is very likely to develop cancer at some point in her life and she requires regular scans. Despite all this, she’s the happiest little girl and her parents are some of the strongest people I know. I think Blakey would make the perfect little princess.

Her second nomination came from Julie who writes “Blakely Rose is a curious three (almost 4) year old girl who LOVES sweets, dancing, swimming, baby shark & her parents (Bobby & Abby). She’s a fashionista, a great big sister & is knocking her goals out of the park at school! Here’s a little background on Blakely’s journey:

In 2017, at 11 months old, Blakely’s parents and doctor noticed some developmental delays. It was originally thought these delays were due to hearing issues, but when tests came back normal they knew something else was going on. Her family was ultimately referred to Babies Can’t Wait, where it was determined she needed speech, feeding, physical and occupational therapy. The autism center she was referred to for therapies did not see children until 15 months of age. So for 4 long months, Bobby & Abby waited. In 2018, at 15 months, Blakely began seeing her therapists and it became immediately clear that more tests were needed. An MRI revealed that Blakely suffered a brain injury in utero at 20-30 weeks. The brain injury is called PVL (periventricular leukomalacia), and is damage to the white matter of the brain. This white matter is what transmits messages between nerve cells & the brain. PVL effects cognitive function and motor skills. Like almost 60% of people born with PVL, Blakely also has cerebral palsy. Shortly after this life-altering diagnosis Blakely received four new diagnoses. Cortical Vision Impairment, chromosome deletion, autism and VHL. The doctor’s explained to Bobby & Abby that Blakely the Cortical Vision Impairment means Blakely only sees in pockets, like she’s “looking through swiss cheese.” This Cortical Vision Impairment could improve over time or could ultimately mean blindness for Blakely. It is also possible that she may need surgery on the muscles of her eyes at some point. The Chromosome Deletion means she will suffer additional developmental delays including difficulty learning to eat and speak. In addition, VHL (Von Hippel-Lindau syndrome) causes cancerous and non-cancerous tumors. Blakely sees an oncologist yearly for checkups and lab work. Her most recent checkups came back clear! At age 8, Blakely will begin having yearly CT scans of her abdomen and MRI’s of her brain and spine to check for tumors and will continue to do so for the rest of her life. Blakely will also need ophthalmology checkups for life to check for brain tumors. In 2019, Blakely was also diagnosed with Epilepsy. She sometimes has frequent silent seizures. As recently as June 2020, Blakely was hospitalized for seizures. Blakely continues with therapy. At times, she’s had up to 6 therapy sessions per week. And despite the prognoses regarding Blakely’s developmental delays, she has slayed one goal after another. It was thought that she would have difficulty walking (if at all). It took lots of hard work, but now she’s adventuring ALL OVER the place! Did I mention she’s a curious one? Blakely has also made enormous progress in other areas. She is mostly nonverbal but knows a few words & some sign language and she now LOVES to eat!

To say that Blakely and her family have been through a lot would be an understatement. But despite it all she remains a joyful, vibrant little girl. Her smile lights up a room. And her parents’ love for her, and eternal optimism, is the loudest part of her story. They have done, and continue to do, everything they can to help Blakely grow and feel loved. I would like to nominate Blakely for your Memorial Princess Session because this family has been through so much and deserves a bright spot in their journey. 2020 has been a tough year of balancing life with work, hospitals, therapy, and checkups, and no one knows what life holds for them down the road. Maybe these photos can serve as a sweet memory, during an otherwise tumultuous time. And after all, you’re only “almost four” once.

And again from Gloria who writes “I’m writing to tell you about my friends and their beautiful family. They have two gorgeous daughters, Blakely and Aria. Bobby and Abby are two of the best people I’ve ever known. Over the last few years, Bobby and Abby have spent most of their time focused on Blakely’s health. Blakely Rose was born with a brain injury called Periventricular Leukomalacia (PVL), it’s damage to the white matter of the brain. She also has Cerebral Palsy and Cortical Vision Impairment that doesn’t allow her to see everything in front of her. Blakley is also missing part of her 3rd chromosome (3p25.3) that causes development delays for walking and talking (she’s pretty much nonverbal). Blakely also has Von Hippel-Lindau syndrome (VHL) – Causes cancerous and non-cancerous tumors and she has a 40% chance of getting cancer in her life. She has to see the Oncologist once a year to make sure her doesn’t have cancer or tumors. Blakely sees a neurologist for her CP, Ophthalmologist twice a year and a developmental therapist twice a year. Blakely has also started having seizures. Blakely is in therapy 6 times a week: Physical therapy twice a week, Occupational therapy twice a week and Speech and Feeding therapy twice a week. Abby and Bobby have insurance but it does not cover everything and the medical bills are very high. Additionally, due to the necessary and demanding schedule, Abby has had to move to a weekends only position which allows for her to travel with Blakely during the week and it’s Bobby’s turn on the weekend. Blakely is hard work financially and physically. Bobby commutes 2 hours to work every day so that the family can live closer to a support system and therapists. They said that Blakely may never walk but this little girl RUNS. She’s so tough and sweet. And she gets it from her mama and daa! Though Bobby and Abby have all of this weight on their shoulders it does not stop them from giving to others. Abby will purge clothes, car seats, coupons, toys and give them to friends or people that need them and never ask for a penny. They never ask for anything and are some of the most deserving and hardworking people. I’m reaching out to you because this family embodies everything you are all about. Abby and Bobby’s pay-it-forward and kind hearts is something that I know you understand. I see it on your show all the time. They don’t let set-backs and obstacles change the fact that they are positive and kind souls. I’m tearing up writing this because I’m so proud to know them and share in Blakely’s journey. I thought you would too.

From Heather

Blakely is a treasure. In fact, her mom says “She’s the best thing that ever happened to us.” How precious. Blakely is non-verbal, but you definitely have zero trouble knowing what she wants or how she’s feeling. She shouts and throws her hands in the air when she’s thrilled. She’s much more attached to other people than most autistic kids I’ve met. I hung back for a few photos and she was quite upset that I wasn’t with her. She started crying until I got up and came to her, then she was fine. She just needed everyone with her at all times. As you can also see, she LOVES water. She stood and screamed at the water for a good 20 minutes. It was so cute. She has unique dark green eyes, just like her mommy. She also twirls her hair a little on the left side. I love little details about kids like that. Even though she doesn’t talk and acts similarly to other autistic children, she also has things that are just her and her only.

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