Letter Of Intent

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Updated On: Dec 25, 2025

We want to start by saying that we are forever grateful to you, for stepping in our shoes and being a part of Tuhina's life and care. We know that that this is a big responsibility and we are thankful that you are there for her. 💗

We hope this document will help you in knowing Tuhina more, and in a way we know her, and may assist you in making informed decisions to provide care for her or decide on next steps. We have tried to make this Letter of Intent as a comprehensive document to share details of Tuhina, with the people involved in her future, and care.

Personal Demographics

Tuhina

  1. Date of Birth: Nov 7th, 2008
  2. Place of Birth: Bryn Mawr, PA, USA
  3. Citizenship: USA
  4. Blood Group: A+

Pooja: 

  1. Date of Birth: May 20th, 1980
  2. Place of Birth: Kanpur, India
  3. Citizenship: USA
  4. Blood Group: A+
  5. Known Medical Conditions: Hereditary disease of Retina decay and Glaucoma, diabetes
Kchitij: 
  1. Date of Birth: Sept 21st, 1978
  2. Place of Birth: Kanpur, India
  3. Citizenship: USA
  4. Blood Group: A+
  5. Known Medical Conditions: Hereditary issues of hypertension, diabetes and cholesterol


Medical Details

Early History:

  • Tuhina was born at 10:49AM on Nov 7th, 2008. She weighed 7lbs 6ounces at birth. 
  • She was delivery normally at 42th week with induced labour. Pregnancy period was uneventful and was decently normal with exception of one event. Mother suffered puppp as pregnancy rashes which was cured with steroids.  
  • Tuhina was observed with global development delays, from what we started noticing within the first few months of birth.
  • The earliest signs was her eyes crossing inwards, which was diagnosed as congenital Esotropia (a form of strabismus). At the age on 7 months she had a eye muscle surgery in Philadelphia by Dr. William Anninger
  • Tuhina started receiving early intervention from the age at around 9 months after consulting developmental Pediatrician. She got physical therapy, occupational therapy, vision therapy and special education from 9 months up until she was 2 years (Oct 2010), when we moved back to India.
  • Tuhina started seeing Dr Brenda Porter, Neurologist at the Children's hospital of Philadelphia before she turned 1. At the same time she also started getting myoclonic seizures and was started with seizure medication
  • After a series of tests, in 2010 she was diagnosed with a rare genetic condition : Mutation in MF2C gene.
  • In 2010 we moved to India due to work visa expiry. Tuhina got her condition diagnosed as autism in India in 2011. 

Diagnosis:

Tuhina has multiple diagnoses. She is diagnosed with a rare genetic condition : MEF2C gene mutation (MEF2C Haploinsufficiency Syndrome). The diagnosis was done at the University of Chicago in 2010.
This diagnosis manifests into the following major symptoms in her
  • Intellectual disability
  • Epilepsy
  • Global developmental delays - speech, gross and fine motor
  • Stereotypic movements - hand wriggling, tongue thrusting, rocking
  • Low muscle tone (hypotonia)

She has a diagnosis of Autism with moderate to severe impairment. 
She also has a seizure disorder. The initial form of epilepsy was myoclonic and febrile seizures, which have now converted into generalized seizure activity in the background. Her seizures are currently under control with medication.

Doctors and Medications

Current Medical Team:

  1. Dr Rina Goldberg: (August 2022) Neurologist St Barnabas Ambulatory Center, Livingston, NJ
  2. Pediatrician: Touchpoint Pediatrics (2017) - Chatham, NJ
  3. Pediatric Orthopedic: Dr Ronald Snyder (2016) Summit Health, Paramus, NJ
  4. Dentist: Pearly Whites, Whippany, NJ
  5. Ophthalmologist: Dr Chen, Advocare Morristown, NJ

Previous Doctors:

  1. Dr Rajeshwari Mahalingam (2015 -2022) Neurologist, St Barnabas Ambulatory Center, Livingston. 
  2. Dr Brenda Porter (2009 - 2010) - Head of Neurology, Children's Hospital of Philadelphia: Dr Porter diagnosed her with myoclonic seizures in 2009 and also with Mef2C gene mutation in 2010. She was working with Tuhina till we moved back to India in 2010.
  3. Dr William Anninger: (2009) - Pediatric Ophthalmologist: Dr Anninger diagnosed her with Esotropia and performed eye muscle surgery in May 2009

Current Medication:

Tuhina is on seizure medication. The current medication schedule is:
  1. Divalproex (875 mg) - 3 capsules (125mg each) in morning and 4 capsules at night 
  2. Lamotrigine (175 mg) - 4 tabs (25mg each) in the morning and 3 tabs at night
  3. Carnitine (1 tab) 1  at breakfast
  4. Vitamin D3 (1000 IU) - daily 1 

Previous Medication: 

  1. Keppra (seizures): started with Keppra as first seizure medicine in 2009 under supervision of Dr Veena Kalra in Delhi. It did not suit her.
  2. In 2013 homeopathic medicines for seizures from Dr. Kalyan Banarjee which worsened her seizures. It was a wrong decision.

Surgeries

1. Eye muscle surgery in May 2009.

Therapies

Tuhina gets the following therapies, currently
  • Physical Therapy (PT) - in school 3 times a week
  • Occupational therapy (OT) - in school 3 times a week
  • Private OT sessions once a week (Thursday) at Intensive therapeutics 
    • Address : 31 Fairfield Ave
      West Caldwell, NJ 07006
    • Phone:  973-771-1582
  • Speech therapy: in school 3 times a week
  • In home services (through Performcare IIH services). A therapist/professional comes to work with her 4 times a week. They work on daily living skills and chores.  Details of contact persons
    • Coordinator : Ciara (Partners of Children of Essex) 

Medical Equipment

Tuhina used to wear shoes inserts to improve her gait. As of 2025 she is not wearing them anymore.

Orthopedic - Dr. Ronald Snyder

Allergies

She has no known allergies.

Functioning

Tuhina has severe intellectual disability and Autism. She needs one-on-one support in all daily living tasks.

Mobility and Physical Ability

Tuhina has a low muscle tone. She also has muscle spasm or jerky movements, both while walking, or when she is excited. She is able to walk, but is a slow walker. Tuhina is not a confident walker on new or uneven surfaces. She needs support to walk on uneven surfaces like bumpy ground or backyard with grass. While walking on sidewalks, she is able to walk on plain surfaces, but walks slower independently. She walks faster if you give her a hand support or put your arms around her back/shoulder. Tuhina needs support of either hand or side rails while going up/down the stairs. She is not able to run or jump independently.

Daily Activities

Tuhina needs help with most of the daily activities: brushing, toileting, feeding, bathing. Below are the details for the support she needs
  • Toileting: Tuhina is on a toilet schedule which currently is every 3-4 hours. She usually remains dry throughout the day with this schedule, but does have occasional accidents especially early in the morning. She tries to pull down/up her pants but needs hand over hand support to pull all the way up/down. She also needs hand over hand support for wiping, flushing, hand washing. 
  • Brushing: Tuhina is not able to brush her teeth. She needs an adult to brush her teeth or hand over hand support if brushing by herself. She is not able to hold water in her mouth. We use a squirt bottle to rinse her mouth after brushing.
  • Feeding: Tuhina is able to feed her finger foods of bite size items. She drinks from a tumbler/cup with straw. She needs help with eating regular lunch / dinner like roti, rice. She is not able to use a spoon or fork independently
  • Bathing: Tuhina needs one-on-one support in bathing - applying soap, mixing water, rinsing and drying.
  • Dressing: Tuhina needs one-on-one help with dressing. She is able to pull down tshirt from her head and put hands in sleaves when guided. She is able to remove shirt with support. She can pull up and pul down pants with gestural/physical prompts
  • Mensural care: Tuhina needs adult support in maintaining mensural hygiene. She uses pads, which need to be changed by the caregiver. Currently she has an inconsistent cycle (around every 1 - 1.5 months and lasting for 6-7 days). She remains active during her periods. She is not able to communicate discomfort such as cramps or leakage and cries if she is not feeling well. In general, we haven't noticed difficulty with her periods up until now.

Speech

Tuhina is non verbal. She is learning to use the prologue app on her iPad but her responses are not yet consistent. she uses gestures/body language to communicate her needs, like reaching out for food/water kept in front of her or moving your hand away if she is done eating. 

Vision

Tuhina had eye muscle surgery when she was 9 months old. She started wearing glasses when she was 3 years old. Tuhina has depth perception issues and has difficulty accessing uneven surfaces. Although she is able to function in day to day tasks without her glasses, we try to keep her glasses on while table top activities/watching TV etc.

Dental

Tuhina never had any dental issue. She cannot spit or hold water in her mouth, so we use a squirt bottle to rinse her mouth after brushing.

She may occasionally grind her teeth. especially while asleep, though we have seen less of that in recent years.

Diet

Tuhina prefers Indian food. At home she eats dal, roti, sabzi, rice for meals. She likes things like poha, upma, halwa, chaat items like aaloo tikki, bhelpuri. She can self feed finger foods like tater tots, chicken nuggets, mozzarella sticks, popcorn. 

In non Indian food Tuhina eats pizza and cuisines that may have rice based dishes or similar to Indian cuisine, e.g Mexican cuisine.

Food has to be bite size. She avoids eating very cold or very hot food. Ideal temperature would be slightly warm or room temperature.

Audio/Hearing

Tuhina has good hearing. She is sensitive to loud sounds and resists environments like parties, temples, etc. where the noise is high and it is hard to distinguish voices.

She responds very well to music and enjoys good music anything from melodies, modern music, Bollywood, instrumental, jazz, reggae.


Behavior

Tuhina  needs constant supervision to carry out tasks. She is a hypoactive kid. This means that she needs a lot of support and push to initiate and stay in activities. she cannot follow multi step directions or commands which involve moving to different locations e.g come here, put the plate in the kitchen. She needs adult guidance and physical/verbal/gestural prompts to carry out these instructions. 

Meltdowns and Coping Mechanisms

Tuhina does not have violent meltdowns, but can be distressed in situations where she experiences sensory overload. She usually cries and tries to get away from distressing situations.
Some of the situations that may get stressful for her are
  • Too many sounds in a confined area, e.g very loud music, too many people talking simultaneously, many different sounds in the same area like conversations along with TV. In such situations she closes her ears and may start crying. We cope the situation by moving her to a quiet corner/another room and pacify her by rocking 
  • Staying out in hot weather. She is not able to cope well on very hot days, especially if she has to walk in the hot sun. 
The techniques that work in these cases are
  • Move her away from the situation, to a quieter place
  • put some music in the background or sing for her in low voice
  • let her rock in a rocking chair or rock back and forth along with her 
  • Noise cancelling headphones 


Likes and Dislikes

Things that she likes:
  1. Music: She likes listening to music as well as playing with musical items. She listens to music on Alexa/audio and also watches youtube videos. Her favorite are nursery rhymes - Dave and Ava, Cocomelon and bollywood songs. 
  2. Musical toys/items: she likes playing with her guitar, xylophone and sitting on the piano
  3. Rocking : Tuhina likes to sit on her swirl chair.  When sitting on a regular couch/chair, she likes to rock back and forth. This is her coping mechanism as well as sensory need. We do not try to stop her from rocking unless it can hurt her or cause damage to property.
  4. Spicy food: She likes Indian food. She can eat and likes spicy items like chat, nutcracker, biryani.
  5. Long drives: Tuhina likes to go for drives in a car. She is enjoys long drives.
Things that she dislikes
  1. Loud noises, chaotic environment.
  2. Any activity that may challenge her fine motor abilities or executive functioning. Tuhina has a hard time accomplishing tasks that involve fine motor skills and tries to generally avoid them  e.g emptying the dishwasher, loading the fridge. 


Education

Current School

Tuhina has an out of district placement from the Livingston School district. She goes to The Phoenix Center, in Nutley NJ. She is on one-on-one support in the classroom and for all related services.
For any schools in future she would need a 1:1 support of paraprofessionals. 
The following are the details of her child study team -
1. District Case manager - Ms Jennifer Lernihan (Livingston School district) (JLernihan@livingston.org )
2. School case manager - Ms Amy Bolliger (ABolliger@thephoenixcenternj.org )
3. Class Teacher - Mr Robin 
4. Speech therapist - Mali DeSantis (MDeSantis@thephoenixcenternj.org )
4. Occupational therapist (OT) - Christine DeLoughry (CDeLoughry-Lama@thephoenixcenternj.org )
5. Physical Therapist (PT) - Jency Joseph (JJoseph@thephoenixcenternj.org )
6. Job coach - Ms Jeannine

Tuhina has an IEP. Her IEP ensures that she gets a 1-1 paraprofessional in class and gets the following services in school
- Speech 3 times a week
- Occupational Therapy  3 times a week
- Physical Therapy 3 times a week
- vocational/job training

Transport - Tuhina commutes to school through transport arranged by the Livingston school district. The van comes to the doorsteps to pick and drop her to/from school

Previous Schools

1. Autism Centre for Excellence (ACE) - Gurgaon, India - From 2013-2015


Housing

Current

Tuhina currently lives with her parents and a dog in Livingston NJ.

Future

  • We plan for Tuhina to continue to live with us till we are in good health to take up caregiving responsibilities
  • After that the best living arrangement for her would be in a group home/private group home/ assisted living/house owned by her with in-home care provider
  • In case of our death when Tuhina is less than 21 years of age, she can live in own house with caregiver/guardian's house


Finances