Help Mavis With Feeding Program

This angel is Mavis Katherine Arsenault.


I am Mavis’ grandmother, aka Honey, and I am starting this fundraiser to help her parents with out of pocket expenses while Mavis is getting treatment at the Marcus Autism Feeding Program in Atlanta, GA.  At almost 3 years old Mavis only drinks formula and does not eat any food by mouth.  At 25 months, her complex and basic movement patterns and oral coordination/motor skills were at the 6-9 month levels.  She has made great strides but is still developmentally delayed.

The Marcus Autism program starts for Mavis 12/22. This is an intensive treatment program Monday through Friday until 2/18/2021. During this time Mommy, Mavis and Murphy will be in Atlanta while daddy stays home to work and continue to provide for their family. This also means that Mommy will not be able to work.  Talon works for the Harris County Water Works Treatment Plant and Courtney is a NICU RN at Piedmont. 

They have the option of a possible stay at the Ronald McDonald house but will not know if they have a room until the day before the program starts.  Covid has also changed some of their policies. During the 8 weeks, Mommy, Mavis and Murphy will NOT be allowed visitors, Daddy and Mommy cannot trade out weeks and Mommy will not be allowed to travel home on weekends. Ronald McDonald house will mean that 8 weeks will be a very HARD 8 weeks. This will include Christmas, New Years and Mavis’ 3rd Birthday - spent alone.

We are hoping that any funds obtained will help offset the out of pocket expenses associated with the 8 week feeding program. Staying offsite, near CHOA, in Atlanta is expensive, while the Ronald McDonald house is a great option, it is a hard option, for a very, already stressful 2020.  Mommy will need a break. Staying offsite, not at the RMH, will allow family to visit, switch out, and more flexibility. Mommy and Daddy still have household and living expenses, doctor bills, gas, and groceries.  Any donations will help offset housing expenses for 2 months while in Atlanta, daily meals, travel expenses and copayments which are required for each daily visit for 2 months.

Mavis was born February 2018. Since she was born she has never eaten well and it was always a struggle to get her to gain weight. In September 2018 at 7 months Mavis weighed 13.5 lbs. and 13.6 lbs. one month later. None of her doctors seemed concerned that she was not gaining weight, until she started having seizures and was diagnosed with infantile spasms, a rare form of epilepsy, and failure to thrive at 8.5 months.

Shortly after her first birthday Mavis stayed a few days at Children’s Healthcare of Atlanta (CHOA) to try a keto diet which can be effective treatment for certain forms of epilepsy. After one week on the keto diet Mavis started to have a severe allergic reaction. Keto was stopped and they continued breast milk feeds through a NG feeding tube until allergy testing could be done. The allergy test showed that Mavis was allergic to eggs and peanuts. They were advised that Mavis should be switched to formula that did not contain eggs until they could be seen by a gastroenterologist. In May 2019 the Gastroenterologist referred Mavis to the Marcus Autism Center Feeding program. Mavis attended feeding therapy in Columbus twice a week where the therapist worked to try to teach her how to eat milk/formula. The goal was to get all of Mavis' nutrition orally instead of via the NG feeding tube. In August 2019 Mavis had reached a point where she was getting enough formula orally to stop using the NG feeding tube. Every day has been a struggle getting her to take her formula orally, however she continued to achieve the minimum goal most days.

In late 2019, early 2020 Mavis was finally seen by Dr. McElhanon with the Marcus Autism Center Feeding Program.  During this visit she was evaluated and accepted for the feeding program as well as trying to determine why she continued to struggle taking formula orally.  A biopsy confirmed a diagnosis of Eosinophilic Esophagitis (EoE).  Medication was prescribed to help Mavis’ throat.  Another biopsy was scheduled for April 2020 to determine if treatment of her EoE was effective. Covid delayed this appointment until September 2020 which also delayed her admission to the feeding program. The biopsy in September 2020 showed that Mavis’ condition had worsened, she was not gaining weight and actually had lost weight.  

During this period, Covid happened and everything was delayed and everything changed.  Mavis was struggling, still not eating great, and not gaining weight. Time stood still as they waited for that feeding program call.  Mavis needed to get in the feeding program no matter the cost. She has to start eating!  Lack of proper nutrition continues to cause lack of progression in her motor skills, speech and growth.

Thank you for your time in reading and sharing Mavis' story. Talon, Courtney, Mavis and Murphy appreciate your donation to help with expenses during Mavis' feeding program stay.