Wednesday, June 13, 2018

Case Study #53 - Ameliana strolling the Ramadan Bazaar

Prep Sketch
Ameliana Meahan Yap fondly known as Amy was born in sunny Singapore. She is the first person in her family to be diagnosed with Neurofibromatosis Type 2 (NF2) at the age of 18. During her adolescent years, she had undergone several minor operations to remove external growths on her back, neck and eyelid.  Back then, they did not link it to NF2 and only mentioned that the cells were schwann cells. They also found out, due to poor eye test, that her left retina has a scaring which was initially misdiagnose as a lazy eye until a second opinion was conducted. Apart from the scaring, she had a floating eye and underwent surgery to correct it.

She did not face any issues during her early teenage years however at 18, she started to experience a sudden ear block on her left ear which she had thought was due to swimming. It did not subside for months and she also started to experience severe headaches. Upon undergoing an MRI, it was revealed that she had a large growth on her auditory nerve which cause the blockage and hearing loss. She also had another on her right auditory nerve and several others in her brain. It was then they relooked at her medical history and concluded she has NF2.

She underwent a radiosurgery known as Novalis instead of an operation for her left growth as it was large and growing very near to the brainstem. They wanted to leave the right growth alone to save her hearing. Unfortunately, months later she would lose it overnight and eventually become completely deaf. During this time, her neurologist arranged an MRI for her spine where it was confirmed she had more tumors alone the spine region. They were left untouched but monitored since there were no issues then. The novalis had fortunately worked in shrinking her left growth significantly.

The loss of her hearing and medication to help with the brain swelling, which at one point caused her to temporarily lose her vision, made her mentally unstable and she had to make a difficult decision to withdraw from her Biomedical diploma to focus on her recovery. She had slipped into depression feeling lost with the now silent world and facing rejections from family members, friends and later on while trying to resume schooling and eventually on getting a job. Thanks to her supportive love ones especially her partner, Damian, she was able to keep fighting on even when things look bleak.
Damian had also helped her cope with learning a new way to communicate with each other via texting, writing and creating their own sign language. It spurred her on to attend sign language classes that brought her into the world of the Deaf community.  Being with other Deaf individuals, she learned how to adapt better into the silent world and became more positive. During the same time, she was offered a job as a Junior Operation Executive at a translation company where she liaises with translators from all over the world online. The job role had boost her confidence and self-esteem as she was given an equal opportunity and treated the same way as hearing individuals. She did not feel she was seen as different.

After gaining 5 years of experience, Amy decided to take a leap of faith and challenge herself further by switching to a multinational company to become an administrative assistant for office support. Her job there requires her to communicate with individuals directly unlike at her previous workplace and handle more roles. She hopes with different roles, she would eventually find out what is her niche and at the same time she would like to create awareness for people with special needs and illness. That through her presence working in the company and constant feedbacks on how the company can assist her, that it will be a more inclusive place which might open up more job opportunities in the future for this group

Being an active person, she joined a dragonboat team comprising of deaf paddlers and hearing volunteers. Later she also signed up to a gym and started to do more strength training which had helped play a part in improving her balance tremendously. Yet again with the support and encouragement of Damian, she has also tried more things such as going back to cycle on 2 wheels and hiking. Still, her favorite is swimming as she loves being in the water. Together, they had also swam with wild dolphins in Perth during their holiday.

Amy believes that with NF2, every moment is very precious and therefore we should seize each and every single day. We should not let the future scare us and prevent us from attempting new things or even revisiting things we used to do. She believes to that as long as you know your limit, give it a try. At least you won’t have to look back wishing you had done it back when it was possible.

Monday, June 11, 2018

A Portrait of Progress - Ashok's New Face

Prep Sketch - "Ashok Taking Photos at Creighton University"
Original painting done in 2016
"Ashok Chatting with Friends"

This is the prep sketch for a new painting of Ashok post 1st surgery. He dressed up in his national attire while my friend took photos of him for me to use as reference. He has nostrils now and I can tell where his mouth is formed. Drinking with a straw is now something he is able to do post surgery. I could understand him much more clearly on his 2nd visit to Omaha after the surgery. Progress is being made! I promised Ashok that if we could raise money for the last surgery where he would get his prosthetic eye, I would paint a life size portrait of him!

For those of you new to the journey, I will start at the beginning:

Ashok Shrestha suffers from neurofibromatosis (NF), a genetic condition that results in the development of multiple tumors in the body. In 2016, he began raising funds to travel from Nepal to Presence St. Joseph Hospital in Chicago, IL, USA to have surgery to remove the tumors which have disfigured his face.

Ashok's visa was approved, and he arrived in Chicago in December of 2017.

After several consultations with the medical specialists and many tests, it was determined that Ashok required two surgeries: one for the tumors on his face and cranial reconstruction, and one to place a prosthetic eye. The cranial reconstruction is of course a risky and difficult procedure due to the exposure of the brain during the procedure. Ashok's skull will need to be literally taken apart and completely reconstructed, and the brain will lack support and protection during this most delicate part of the procedure.

In addition, the cost of lodging in Chicago has been higher than he anticipated, and he needed someone to help him with meals and other needs after his has been discharged from the hospital, while he is still recovering from the surgery. He has no family and no traveling companion to provide him with day to day assistance and care.

Ashok's arrival in Chicago coincided with my art exhibit in Norfolk, Nebraska to raise NF awareness. It featured paintings of people with NF. This painting of Ashok is among the featured paintings in this exhibit. Ashok made a trip here to Nebraska to participate in the exhibit. My friend Mary and her husband offered him a place in their home while he was here. I was able to schedule several media interviews for him during his visit regarding neurofibromatosis in general and his situation in specific.

Out of these interviews came a request for a US-based GoFundMe page to facilitate the additional fundraising needed to cover Ashok's surgeries, as well as any lodging and meals while he is in Chicago, and any after surgery care he requires during his recovery. My friend Mary stepped in and did all the logistics.

To read the story of Ashok's first visit to Omaha and his interview with the Omaha World Herald, click here:
http://www.omaha.com/livewellnebraska/plus/grace-disfigured-nepali-man-in-u-s-for-surgery-comes/article_89f10aec-d4a8-587a-b820-352dbf683e36.html

To see more of Ashok's story so far, you can read this article:

We had many setbacks during this journey including the hospital reviewing his case and more than doubling the expected costs of the surgery. We are blessed that so many people stepped up and donated--including my friends, family and Creighton University along with the NF community and Nepali communities in Chicago and Omaha. In fact, all bills received for Ashok's first surgery have been paid in full! Thank you to each and every one of you who have made this possible!

You can see the difference in Ashok from this before and after picture. Dr. McKinnon was able to remove about 85% of the tumor:
Before and after the first surgery


The amounts paid specifically for the 1st surgery and recovery were:
$25,000 to Dr. McKay McKinnon
$26,500 to Presence St. Joseph's Hospital
$3,528 to Midwest Anesthesia Partners

The Chicagoland Nepali Friendship Society raised funds which covered a live-in caregiver for Ashok during the first month of his recovery. Members of the Nepali community in Chicago have also continued to provide Ashok with an apartment as he recovers and waits for his next surgery.

Thanks also to the family of Sheila Drevyanko, volunteer with the Iowa Chapter of the Children's Tumor Foundation. Her family has provided significant support, including transportation to and from the hospital and most doctor's appointments, furniture for the apartment, help with filling prescriptions and much more. We appreciate their "feet on the ground" support in Chicago.

We have come so far, farther than we would have thought possible! When the hospital nearly tripled their fees, none of us knew how we would ever have the funds necessary, but you all came through.

Please continue to share this campaign and contribute as you are able. We have only weeks before Ashok will be ready for the second surgery. Estimated cost is approximately less than $20,000. It isn't nearly the hurdle of the first one, but still... no small sum. All help is much appreciated!

https://www.gofundme.com/ashok-shresthas-surgeries