After countless years searching for a diagnosis for their daughter, Chris and Da-Nay Macklin finally discovered February 2019 that their “joy baby” 10 year old Makayla has PANS/PANDAS.
Relieved, they could put a name to the multitude of debilitating symptoms that attacked Makayla when she was just seven years old experiencing: severe sleep disturbances (think Night Terrors AND Sleep Walking but severely aggressive), horrible vivid nightmares she would act out, moodiness, emotionally instable, irritability, aggression and MAJOR rage, anxiety, hyperactivity, motor abnormalities (deteriorating handwriting skills), oppositional/defiant behaviors, inability to concentrate and insomnia lasting month after month non-stop. Major fluctuating personality changes DAILY instead of functioning as a 10 year old it is more like she is 3, 4, or 5 years old.
Getting a diagnosis was a long awaited blessing, but the Macklin’s journey is still far from over.
With an alarming number of doctors uneducated and unaware in most cases with this somewhat “new” disease, the family had no choice in turning to an out-of-network specialist Dr. Corbier (Brain Restoration Clinic) for Makayla to even receive her initial diagnosis. Sadly enough insurance isn’t covering the majority of the care she needs to put her disease into remission.
The current cost and forecasted cost to treat Makayla’s condition are anticipated to cost $25,000 through 2019 alone.
Chris and Da-Nay have done so much for others since their time in Chicago until moving to Charlotte volunteering to help others in need. Da-Nay actually coaches people in need, but has been unable to take on the volume of clients monthly as a result of having to attend to Makayla all day every day so this has had a negative impact on their income. Chris works tirelessly as a full time manager by day and a handyman by evenings caring for his family as best as he can.
Beyond their jobs, anyone who knows the Macklin’s knows they are extremely giving, helpful, and a loving couple and family who would take food from their refrigerator and clothes from their closet to give to anyone in need. In addition to their pride and joy Makayla, they have three adorable fur babies that have had to unfortunately feel the negative impact of her condition too.
Let’s help the Macklin family get Makayla the proper care she so desperately needs to heal and continue living life to the FULLEST!!!WHAT IS PANDAS/PANS?
Let me guess you have never heard of PANS or PANDAS have you? Sadly enough many doctors have not either.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. According to Stanford Children’s Health , “PANS is a clinical diagnosis given to children who have a dramatic – almost overnight – onset of neuropsychiatric symptoms including Obsessive Compulsive Disorder (OCD) and/or eating disorder.”
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.
Specifically, PANDAS is an autoimmune condition in which either strep and/or lymes antibodies attack the basal ganglia of the brain, causing drastic and sudden decline in large motor and emotional and psychiatric abilities. According to Stanford Children’s Health , “To date, PANDAS is the only known subset of PANS, but we may discover more in the future."
PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.
Want a glimpse into the lives of the Macklin family dealing with this? Watch this video resembling the what the Macklin’s endure: https://abcnews.go.com/amp/Health/column-monster-consumed-boy-life-child-diagnosed-pandas/story?id=56630132&fbclid=IwAR1YxGoN6dPZJOU1pI_Cfu5PYfBBkgqe2KQorAYLzpDt4rwVWhIEdKE5Nfc Makayla’s Journey
The Macklin’s first knew something was wrong with Makayla in 2015, when her behavior suddenly changed after she was prescribed Singulair. They trusted their doctor initially only to discover the horrific side effects of this medication in children. Including but not limited to suicidal thoughts!
Month after month, week after week, day after day, Chris and Da-Nay tirelessly exhausted every possibility trying to determine what was going wrong with their sweet daughter. They tried sleep studies and had her undergo numerous psychological evaluations.
Poor Makayla has been to see 3 Pediatricians, 2 Sleep Specialists, 1 Pediatric Neurologist, 1 Gastroenterologist, 2 Psychiatrist, 2 Psychologists, and 2 ER hospital visits that resulted in them sending her away to a children’s psychiatric hospital 3 hours from home. Along with the a 2nd ER visit where one incompetent doctor committed her involuntarily! Leaving the family held hostage in a psychiatric room with no windows, a woman looking into the room at all times, and screaming adult psychiatric patients next door beating on the walls and using profanity is what Makayla was subjected to because of the lack of educational awareness with this disease.
In-network doctors available through their insurance approached Makayla’s symptoms with a mindset of disbelief and/or dismissal. Every route that the Macklin’s pursued through their insurance was leading them to brick wall after brick wall.
Finally, the Macklin’s discovered PANS/PANDAS through a concerned parent at Makayla’s school who saw Da-Nay’s plead for help on Facebook. In February 2019, they met with a PANS/PANDAS specialist Dr. Corbier who confirmed their suspicions and diagnosed Makayla with this condition, nearly three years after the start of her symptoms!Urgent Treatment for Makayla
Behind Makayla’s anguish is a super sweet and sensitive “smart cookie” as her parents have called her for years who loves school, Girl Scouts, Girls on the Run, making new friends, playing with her fur babies and any fur babies for that matter, and just loves living life to the fullest out loud and she is super funny a total sweetheart! She has been unable to enjoy any of the above because sadly enough PANS has stripped her from her quality of life as she once knew it. She has not been to school in over 3 weeks and is now Homebound as a result of this condition.
Makayla is the type to make an amazing big sister but as a result of this her parents have had to put that dream on hold unfortunately. However, she is truly amazing with her German Shepherd Sasha that she loves to play with and help her mom train when she snaps out of her PANS state occasionally. Though her parents physically see her daily, they do not see her mentally for long periods of time. She wakes in a PAN episode EVERYDAY and stays that way ALL day with the exception for 10-20 minutes on average. If they are lucky and get her out the house and she snaps out of it then they may be able to spend the majority of the day together enjoying Makayla before she has another PANS episode.
Her condition has been extremely difficult for her. As there has been many of days and nights where she just cries continually and screams “I just want to be normal”. Her diagnosis was bittersweet for her in knowing she was not alone and that it was not her fault, but still she feels hopeless of being healed.What Will GoFundMe Cover?
The $25,000 that we are aiming to raise through this GoFundMe will cover Makayla’s treatment through the end of 2019:
$500-1000/ monthly for out-of-network specialist doctor appointments and phone consults
$245/ monthly for customized compounded supplemental vitamins
$440/ monthly IV treatments
$100/ monthly for additional supplements
$100/ monthly ($25 per week) for talk therapy (out of pocket after insurance)
$50-200/ monthly for out of pocket genetic testing’s and labs
$120/monthly math and English tutoring over the summer in preparation for 5th Grade
Makayla is desperately in need of IVIG treatments (NOTE: these are different than the IV treatments above) and we are praying our insurance will approve the IVIG treatments. However, based on other cases it is a possibility they might deny her. The total cost of IVIG therapy ranges from $5000 to $10,000, depending on the patient's weight and number of infusions per course. Additional costs may include a hospital stay if home infusion is not covered. So please take this into account.
The treatment plan is as holistic as possible and will likely receive some additions as we go forth, but we are accounting for what we know at this time to reduce the inflammation affecting her body and remove harmful toxins so her body is able to fight the infection full strength. In an effort to be conservative the numbers do not reflect her dietary expenses for a more customized diet to aid in healing her body.
While PANS/PANDAS is never completely healed, Makayla’s specialist has provided great success to other patients in bringing these conditions into remission. How Can I Get Updates?
We will be posting updates on Makayla’s progress on this GoFundMe page every three months, or more often if the news merits! You can also follow along at the “Help Makayla Macklin Heal from PANS” page on Facebook, coming soon.How Can I Help Beyond a Donation?
Please, please, please be so kind as to share this campaign! We also encourage you to learn more about this increasingly common, and very debilitating, disease -- perhaps another parent you might know won’t have to search so long to find the answers they need for their child. And please pray hard for Makayla’s healing and her family’s efforts along with prayers for peace to be restored to the Macklin household.Thank You Message from the Macklin’s
“Thank you in advance for your generosity and having a heart for our heart…Makayla! We truly appreciate every prayer, monetary contribution, encouraging word, meal delivered, and just overall friendship as we are learning it really does take a village! We have been blessed by our network of beautiful souls, turned friends, turned family now! May God bless each and every one reading this as we all encounter storms that rain on our lives so THANK YOU for being a beautiful rainbow in a sad storm!”