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Jedd Leo - fondly called by his first name, Jedd, his alias Jeddo (Jedd-Oh) or the ‘flash’. Jedd was diagnosed with DESSH in February 2022. The very active and strong willed 5-year-old was born in the Greater Accra region of Ghana, West Africa. At birth clinicians noticed he had a mild form of neonatal jaundice which cleared by phototherapy and sun bathing.

Jedd would spit up food every time he breastfed. It was a daily constant that made his first time

parents very worried. His parents shared their concerns with doctors and were told that it is a phase which will pass. They later found out (post diagnosis) that it was acid reflux, a symptom of DESSH. When Jedd was 2 months old, his mother discovered through a YouTube channel that tummy time was important to help strengthen core muscles, so they began tummy time. At the time his parents didn’t understand the full extent of tummy time’s importance and impact. They tried tummy time, but Jedd disliked it so much that he would cry uncontrollably. Due to the discomfort, they did further tummy time inconsistently.

Jedd began to miss milestones at 8 months old. He had delayed gross motor skills (not crawling, and rolling over was a challenging). His speech was also delayed. His family’s concerns were shared with his pediatricians at 8, 9, 10 and 11 months and he was finally examined. Doctors told them that some boys are late crawlers, talkers and walkers and that they shouldn’t be too concerned. ‘When the time is right, he will meet his milestones.’ Jedd turned 12 months and still wasn’t crawling, was still not verbal and walking was quite a distance away. He was examined by the Head Pediatrician of COY Pediatrics, Dr. Christiana Osei Yeboah - who diagnosed him with low muscle tone and advised that he start Physiotherapy (which he did until 2 years old). He also began swim therapy, lasting until the COVID lock down. Due to Jedd’s constant upper respiratory tract infections, swim therapy hasn’t been revisited.

Jedd was a great jolly eater when he started solids. He would eat everything until 16 months old, when it all went downhill. His family started experiencing challenging meal times when Jedd would fuss and only eat a few spoons - and constipation set in. The challenge of meal time and constipation is still present. It is especially challenging when Jedd has an upper respiratory tract infection which mostly comes with red insect bite-like spots. The constipation is despite stool softeners, seeing a nutritionist and an EnT Specialist.

Alarm bells went off again when his family would call Jedd by name and he wouldn’t respond. They shared concerns with his pediatrician and were referred to have an Auditory Steady - State response (ASSR) test done at the Auditory Department of the Hearing Assessment Center at the Korle-Bu Teaching Hospital in Accra. The auditory test was done and the result stated that his hearing was normal. Jedd started speech therapy when he was 18 months old. One of Jedd’s Pediatricians, Dr. Adeline Asante Kwabiah of COY Pediatrics, was also concerned with his speech delays - and gave them a referral to see Dr. Marilyn Marbell-Wilson, a Pediatric neurologist of Mission Pediatrics, in Accra. She examined Jedd but determined that he was too young for an accurate diagnosis to be made. She examined Jedd for low muscle tone and gave a name to it as ‘benign congenital hypotonia’ and said to continue physiotherapy. His parents later noted that hypotonia is a symptom of DESSH.

When Jedd turned 2, he was assessed by the pediatric neurologist and diagnosed with ASD level 3 (Autism). The neurologist ran a thyroid test, calcium and phosphate level test, all showing normal range. Jedd had a brain MRI with no obvious abnormalities. The Pediatric neurologist advised that Jedd have intensive Occupational and Speech therapy. Jedd was also diagnosed with sensory processing disorder. He seeks oral sensory input as well as vestibular and proprioceptive input, among others. Pediatric neurologist visits have recently been moved from 3-month visits to a 6-month visits because of the improvement seen in Jedd! With physiotherapy and prayers, Jedd started rolling, crawling, cruising and surprisingly two weeks to his second birthday - started independent walking.

His mother felt there was more to Jedd’s symptoms than she was initially told. While privately researching Jedd’s symptoms, she found an Instagram/YouTube video of a little girl with similar conditions as Jedd’s, who was misdiagnosed of having ASD. The little girl later had exome sequencing testing and she was discovered to have Chung Jansen Syndrome or PHIP Related disorder. At that point, Jedd’s mom was convinced Jedd had that. She shared a google article and the YouTube video with Jedd’s Physiotherapist, who shared it with a friend of hers (the founder and head of Rare Disease Ghana Initiative, Mr. Samuel Agyei Wiafe). Jedd’s family was introduced to Mr. Wiafe and his foundation, and blood samples were collected from Jedd and his parents at Datwell Medical Center by Dr. Abena Tetteh. The samples were sent to a lab in the U.S.A. for genetic testing. The Whole Genome Sequencing test diagnosed Jedd with WAC-related intellectual disability or DESSH. Jedd is currently in Pre-K at an inclusive school where he does Montessori 3x a week and therapy school 2x a week. Therapy at school includes Speech, OT, son-rise therapy and ABA. He also has OT and Speech at home 2 times a week. His family has seen great improvements.

Pediatric Ophthalmologist Dr. Dzifa Ofori- Adjei at Lister Hospital diagnosed Jedd with a mild form of astigmatism. Jedd wears a prescription glasses (which he dislikes) to help correct the diagnosis. Jedd has recently had liver and kidney function tests, as well as allergy profile testing and his levels are all in the normal range. Dr. Ama Benin, one of his many Pediatricians at the International Maritime Hospital (IMaH) in Tema gave Jedd an EEG to rule out seizures. The results were normal.

Jedd’s struggles have been the constant monthly upper respiratory tract infections, trying to potty

train, developing his fine motor skills, just to name a few... In the past, Jedd suffered from frequent night terrors. Jedd has bruxism (he grinds his teeth a lot on the onset of infections, and when he’s in pain or discomfort).

Jedd is an incredibly sweet, smart and happy boy who loves car rides, books, his kindle, Swash

Buckle and Grace’s amazing machines on Cbeebies, lingo Kids App, muscle t-shirts, playing with

water, banana-mango-pineapple smoothies, cerelac, running around, laughing, playing his toy

piano and tickles. He also loves long walks (which is very stressful to handle at times lol) and likes to

be spun. He likes cuddling, kisses, exploring and also being mischievous. Jedd communicates non-verbally by gestures and vocalization and he sometimes sings along to ‘Old Mac Donald has a farm’ which is the cutest! Though he is non-verbal, his receptive communication is gradually improving. He surprises us with new words every once in a while.

Coping with all of these diagnoses has been incredibly stressful for his parents, as well as Jedd. Sometimes heart wrenching - but most importantly humbling and an extremely insightful learning journey and experience. Being your own advocate as well as early intervention has helped a great deal. His parents feel that God has been so graciously good to them. Jedd has a super power! He is neurodivergent and uniquely wired. They are hoping for the best for their amazingly sweet Jedd-oh the flash.

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