Help Kayla Say No To Wheelchair @ Boston PPRC

*** Update 4-28-22 Mikayla had to undergo emergency surgery today in another area not related to the treatment that brought her to Boston. The surgery went well and the doctors are hopeful that Kayla will be able to resume her original treatment this coming Monday! She is one tough young lady and we are grateful for all those that have prayed and donated to help in this time of need. ****

Please help the Allsopp family as we raise funds to help cover the overwhelming cost of Mikayla’s upcoming 6 weeks at Boston Children’s Hospital. Every day Mikayla will be battling through intense treatment to avoid being confined to a wheelchair by her mid-twenties as her specialists have predicted would be the case. At the end of this explanation we list out specifically what these funds being raised will be spent on. If you read below the following sections are included: Brief Summary, The Hurdle (The Problems), The Opportunity (Treatment), Explanation of How the Funds are to be spent, and some photos of the journey. 

 

We would like to first give a summary of her condition and the reason for this 6 week treatment in Boston. But if you are interested in knowing more of her journey and what really led to the need for this treatment, we will be setting up a Facebook group for you to join to keep you informed of her treatment, updates of her continual journey and even glimpses of her whole story from the beginning of her medical challenges. Be looking for this page in the next few days.

 

Kayla has been walking through an extremely challenging and life-changing medical journey for many years now. As a family, we have walked alongside her through literally hundreds of pain-filled days and nights, well over a hundred doctor/specialist appointments, many ER trips (the most recent one was just one week ago because she passed out at work while standing on a step ladder and hit her head), multiple surgeries, and even being “air-flighted” from New Bern to Charlotte due to emergency medical issues. She has received multiple diagnoses and faced many hard choices over the past 6 years. Every day is a battle for her…some days much harder than others. But every day is also a victory. She has refused to be defined by her diagnoses and by her limitations. Most would never know what she faces unless she were to tell them. She is a warrior (an exhausted one, but a warrior none the less). She has been fighting with more heart, strength, and determination than we thought was possible from a young lady of her age and she continues to fight this way. Please join her in this fight and help her gain this huge victory set out before her.

 

BRIEF SUMMARY: Over the past 6 years Mikayla has had to see multiple specialists in various fields across various states for various medical issues.

 

Specialists: Gastroenterologist, Colon Dysmotility, Cardiologist, Neurologist, Orthopedist, Endocrinologist, Hematologist, Urologist, OBGYN, Pain Specialist, Rheumatologist, Immunologist, Physical Therapist, Occupational Therapist

 

States: Florida, North Carolina (Morehead, Wilmington, and Charlotte), South Carolina, and Massachusetts (Boston).

 

Diagnoses (not all listed): Dysautonomia, POTS, Colon Dysmotility with cecostomy, Sinus Tachycardia, Hyper Mobility Syndrome (disease of the musculoskeletal system and connective tissues) with generalized hypermobility of joints (joint disorder), Postural kyphosis of thoracic region, Postural asymmetry with mild to moderate scoliosis, Postural instability of trunk, acquired bilateral ankle pronation (deformity of ankles), Somatic Symptom Disorder with Predominant Pain, Myofascial Pain Dysfunction Syndrome, Tight unbalanced muscles, Chronic pain and headaches, Sensory Processing Difficulty (with hyper amygdala responses), Hypersensitive nerves, Neuropathy, kidney stones, ovarian cysts, bladder dysfunction, chronic anemia and ferritin deficiency (inability to store iron), exercise induced asthma, etc.

 

Basic Breakdown: Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system innervates every tissue and organ of the body. Dysautonomia represents abnormal function between the brain and the body. Dysautonomia is a condition that can be very debilitating in severe cases. Most people with dysautonomia have POTS and only suffer with some symptoms. Unfortunately, Kayla suffers with almost every symptom and has an extreme form of general dysautonomia. Her symptoms include unstable blood pressure, lightheadedness, dizziness/vertigo, increase in heart rate (especially upon change in position, such as standing up), fainting/passing out (especially with physical activity), inadequate blood flow throughout the body, changes in vision (dry and blurry), weakness, nausea, headaches, problems with balance and walking, fatigue, excessive thirst, intestinal issues (colon dysmotility – the last third of her colon doesn’t function so she had to have surgery and has a cecostomy which requires daily flushes that take up to an hour or longer and can cause pain and feeling totally wiped out, reflux, nausea, constipation and diarrhea), nerve pain and/or numbness (neuropathy), joint pain, problems with bladder and bowel, kidney dysfunction including kidney stones, decreased ability to sweat and body temperature dysregulation. Symptoms also can be unpredictable and change in intensity, as well as be exacerbated by emotional stressors and physical activity. There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease. There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life.

 

Among some of the other medical challenges she faces is colon dysmotility. This is what really stood out the most in this long journey. The last third of her colon does not work or function anymore (we have no idea why and may never know). This is what caused such pain and nausea and vomiting and not being able to eat for so long.

 

THE HURDLE: As parents, we have requested and received second and third opinions from these specialists to ensure the best possible care and solutions for her many challenges. Most of her issues will require life-long treatment and care and it has taken us several years, but we are finally in the maintenance for the most part in these journeys. But there is one major immediate hurdle for her to overcome yet, and it’s probably the biggest one to date. When multiple specialists across multiple fields in multiple states, all employed at different hospitals and practices, all agree that this treatment program is the only option to ensure Mikayla is not handicapped and disabled and ultimately confined to a wheelchair by her mid-twenties, we must make it happen!!! In Kayla’s evaluations and appointments, it was determined that she is in the “SEVERE” stage of functional disability and things will only get worse for her body if something drastic isn’t done. The specialists have said that she will be in a wheelchair and unable to work by her mid-twenties without drastic intervention. She is in constant pain due to the hypersensitivity of all her nerves throughout her entire body (physical touch is often painful to her which breaks our hearts). Because of the hypermobility joint syndrome, connective tissue disorder and scoliosis, her muscles have had to adjust for her entire life to protect her connective tissues and bones and joints, so they have both deteriorated as well as locked up which causes very limited mobility and much pain whenever using them. This means that just normal things like getting dressed and throwing a baseball and even just standing or walking around are very painful and fatiguing. When you add those issues to her sinus tachycardia (extremely fast heart rate even at rest), blood pressure issues which causes constant dizziness and syncope/fainting, blood flow issues which causes neuropathy in her extremities and weakness in her muscles, as well as headaches due to lack of blood to the brain and exercise induced asthma, Kayla’s body has been severely limited in almost everything. She has been working so hard on her own to overcome so much already and even had a huge breakthrough and was able to play one more season of baseball (although it was extremely challenging and scary at times), and she now has a job at Bill’s Pet Shop…and I can assure you that both accomplishments are absolute miracles. But her body has stalled out at this point and it’s a fight just to keep things from getting worse and not much hope of it getting better on her own. So the answer to stopping the downward spiral and even to improving her quality of life has miraculously been offered to her, and we must take it!

 

THE OPPORTUNITY: The Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Boston Children's Hospital at Waltham is an intensive day treatment rehabilitative program for children and adolescents between 8 and 17 years of age, who experience ongoing chronic pain, functional disabilities, and limitations in completing typical daily activities after they have tried outpatient treatments. The PPRC operates on a day-hospital model of rehabilitation, working with up to eight children and their caregivers at a time. This program involves participating in pain rehabilitation for 8 hours per day on weekdays and completing additional requirements in the evenings and on weekends.

PPRC highly specialized and dedicated team includes:

• physical therapists

• occupational therapists

• psychologists

• recreational therapists

• music therapists

• social workers

• nurse practitioners

• physicians

The staff at PPRC work together to provide an individualized treatment plan for each participant. The success rate for improved quality of life for those who complete this treatment is in the low 90s percentile.

 

This treatment program is very specialized and only allows 8 patients at a time for 6 weeks at a time. There is a long waiting list to attend, and each patient must be evaluated and approved for participation. Many children are not approved because their pain and disabilities are not at a high enough level to warrant this intensive program. For our journey, first, Kayla’s cardiologist referred her out for evaluation by a pain specialist in Greenville, South Carolina. He was a wonderful support for us, and he strongly recommended as well as referred her to the Pediatric Pain Rehabilitation Center at Boston Children’s Hospital. The next step was for Kayla to be evaluated by the specialists at Boston Children’s Hospital, all medical records and history reviewed, and both the specialist team as well as the board of directors for the Mayo Pediatric Pain Rehabilitation Center at Boston Children’s Hospital had to decide if she qualified and would be accepted as a future patient. She did indeed meet all the stringent requirements for entry into this program, and she was added to the waiting list for a slot to open to begin treatment. We have been waiting since November of 2021 and NOW is the time. She is slotted to begin the program on Tuesday, April 19th, which means we will begin our travels up there right after church services on Easter Sunday. A perfect day to start a new life for her, don’t you agree?

 

Kelly will be staying in Boston with Mikayla to support her in these upcoming difficult, painful, and stressful 6 weeks in her life. It is required that at least one caregiver attends as well as to participate in the program and be equipped as a caregiver weekly on Wednesdays. This is a daily outpatient treatment program that will run Monday through Friday from 8am until 4pm as well as have requirements on evenings and weekends for Kayla. She will also have to continue with her homeschooling throughout this time in order to not fall behind anymore since she has had to miss so many days of school due to her disease. Kelly will continue working full-time for the church while she is away as well. I will stay behind at home to hold down the fort and take care of all of Kayla’s animals (6 rats, 4 ferrets, 1 cat and 3 dogs) which is almost a full-time job in and of itself. (Haha…) I will miss them both greatly. Outside of my Marine Corps days, this will be the longest we have been apart by far. As you can see, this is a mammoth undertaking for us all!

 

THE BIG ASK:

 

1. Prayer!!!

2. Financial partnership!!!

 

Not only is this a huge challenge (mentally, physically, and emotionally) and a huge opportunity (success rate is in the 90% range) for Kayla, this is a huge financial challenge for Kelly and me. Over the past years, we have had to travel and stay overnight for well over 20 trips spread out from Charlotte, NC, to Greenville, SC, to Boston, Massachusetts. The number of appointments and ER trips are well over 100 in number and our personal finances have taken a huge hit. We have easily hit our “Out of Pocket Maximum” in insurance every year and have had over $600 monthly just in prescriptions alone this whole time as well. We are so thankful God has provided miraculously to enable us to take these trips and take care of our girl. If you had the chance to listen to Kelly’s sermon recently titled “Mountain or Miracle”, she showed everyone the “mountain” of bills that still await our payment. But God has continually reminded us that the “mountain” is really a “MIRACLE” in the making and He will provide. So, we have immense peace about this Boston endeavor. We are asking you to please pray for Kayla and Kelly over this time. We have been told it is very difficult and many kids want to drop out of the program once they start. But because of the work Kayla has already been doing and because of the determination and attitude she has demonstrated in the fight, they believe she will be successful! We know that it is those things as well as the prayers, love and support of our friends and family, and most importantly, our Heavenly Father who loves Kayla and has an amazing plan for her life (why else would the enemy try to destroy her so early in life?) that will bring success. Kayla’s life and Kayla’s testimony WILL bring glory to God!

 

EXPLANATION OF FUNDS NEEDED: The funds we hope to raise will be used to help cover the following costs of this treatment…

 

• Lodging for at least 6 Weeks in Boston for Kelly and Kayla

o Due to Kayla’s other medical challenges and daily treatments, they must stay in a place that has a private bathroom for Kayla. Kelly will be working while she is in Boston, so she will need a comfortable place to work as well.

• Food and incidentals for 6 weeks in Boston for Kelly and Kayla

• Gas, Hospital Parking, and Metro passes in Boston

• (2) Plane Tickets for Jim to be able to assist in getting them to Boston and back home

o An extra bonus would be at least 1 ticket so that I can fly there half-way through to offer support and encouragement and get some equipping on one of the family days as well…

• Medical bills, specialist bills, medical/treatment supplies, prescriptions, and health insurance deductibles

• Any extra funds raised would go directly towards her past medical bills that are in the “mountain but soon to be MIRACLE” pile

SOME PHOTOS OF KAYLA’s JOURNEY: 

Ambulance ride to New Bern Airport to be airlifted via life flight to Levine’s Children’s Hospital in Charlotte.

Mikayla being loaded into the Life Flight jet in New Bern to be taken to Levine’s Children’s Hospital in Charlotte. 

Grandfather praying before one of Kayla’s many surgery’s and procedures. 

Over the years there were countless times when we didn’t know what was going on. The only thing we knew was Kayla was in terrible pain and sometimes all family can do is be there with a shoulder to lean on. 

Over the years this is a nightly occurrence. Kelly being an amazing mom and doing what only moms can do well… provide comfort and peace in times of great struggles and pain. 


This only shows a small portion of Kayla’s grit and determination as she preps for yet another procedure. 

Honestly there are so many of these photos that as I type this I can’t tell you if this is pre-op or post op or even what surgery or procedure this is for. 

Despite all that is going on there is still time to smile and thank God for life and the best mom in the world!

I do love hockey but I tell you the truth, being on the ice at stick n puck with Kayla, watching her skating improve is simply the best! When she turns 18 I can’t wait to play with her weekly in the adult leagues.

Given Kayla’s vast experience with just about every type of nurse from so many places I am assuming she is not impressed with this one. LOL 

We all know that Momma’s bear a burden that only other mothers can even begin to understand. 


Sometimes test after test becomes frustrating. I often heard Kayla say, “I wonder what else they are going to find wrong with me that they can’t fix?” She would rebound and resume her awesome positive attitude and her never quit mindset. But there were many times she had to battle with those thoughts. 

Kayla started playing baseball (not softball) when we moved back to NC having never played before. In 1 season she went from never played to being one of the best catchers in the League. Before she had to step down for a year when she could physically not play she was the best catcher in Havelock Little League according to several coaches. 


It took getting a few letters from doctors and a medical release waiver but after a year off the field Kayla played another full season and stepped away from being one of the best catchers in Havelock Little League on HER TERMS. (She did switch to hockey so I am cool with that.) 

Parents are often proud of their children. In my opinion sometimes for no reason. Knowing the battle and the physical drain and pain Mikayla went through just to get back behind the plate and play one more season before she retired is one of the proudest moments of my life. My Daughter did that!

No fear, just a firm resolve and a desire to get better and enjoy life. 

Trust us we are experts in hospitals and sometimes you just have to sneak in some real food. 


If you are in a hospital and you can smile then be like Kelly & Mikayla….. DO IT! 

I do remember this one…… evidently Dad jokes and my antics were not as funny as I thought they were. 

Kelly and Mikayla had to go to Boston for a week for evaluations and testing to even be considered for this program that this Go Fund Me is set up for. Durning some down time in between doctors visits Kelly took Kayla to the Boston Bruins Practice facility for some much needed ice time! 



This is the most recent trip to the hospital having happened just a few days ago in early April after Mikayla passed out at work and hit her head while working. (Getting some fish for a customer at the local pet shop where she works.)