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Zarah


Zarah Stephanie Thompson was born on September 13 th of 2015. She is our first child and was born in

Prince Albert Saskatchewan. Zarah had a normal birth and a great Apgar score of 9. There were no

concerns except that she has always had trouble with eating. Zarah could never latch for breastfeeding,

so we bottle fed her. At her 1 month check up she was referred to the paediatricians because of a heart murmur. At that appointment we were unaware of the reason and thought it was just a routine check up. They disclosed the heart murmur that they heard at birth, but it was no longer there. She was then

referred to SLP for her delayed swallow. We would give Zarah a 3 or 4 oz bottle of formula and it would

come out her nose and make her lips and nose turn blue. Every bottle would take around an hour to

feed her. She had a very weak suck and just struggled a lot. The swallow study confirmed she had

laryngomalacia. They told us to add 1 extra scoop of formula to “thicken” it a little and to hold her like a

little football facing outwards so we could control the flow a bit better. This helped quite a lot, but it

never did speed things up. For the first 18 months of her life, it felt like we were always giving her a

bottle.


As Zarah grew she developed atypically, for an example she learned to how sit on her own but had to

have help with the prop of a pillow. She Turned 90 degrees in her crib once in her entire life. Zarah

never did learn how to crawl but eventually has become very strong. She has hypotonia but her strength

in her core is amazing and her head and neck control is very good. She sits up nice and tall in her chair

and I think this has to do with the intense therapies she received at age 1 through 2 when we were living

in Yorkton.


Zarah started being referred to numerous sub specialists. Zarah started with endocrinology, neurology,

respirology, genetics, metabolic, gen peds, ENT, and developmental pediatricians. She was also being

followed intensely by physiotherapy, occupational therapy, and speech and language therapy. She Saw

ophthalmology and had hearing tests and MRI’s. No body could tell us what was happening to our

daughter and this absolutely terrified us. She was happy, and smart. She engaged very well and

responded to us with her hands and eyes. She could point to things in a book but somehow through the

developmental stage of the younger years we felt like we were loosing her at the same time. She would

make some gains developmentally and then she would have a blank stare for weeks at a time. We now

know those were called regression periods.


When she was around 18 months old Zarah had an aspiration pneumonia so severe they air lifted us to

Saskatoon. During this stay she ended up having her genetics inpatient consult which we were so

grateful for because the outpatient wait list was at the time 4.5 years long.


6 months later I received a call from genetics to do a telehealth meeting. We found out our daughter

had a rare genetic disorder called Rett Syndrome. Our world shattered but at the same time as we

researched the disorder found some comfort in having answers. We could better understand her and

that made all the difference.


Rett Syndrome takes many things away. With this diagnosis she has had additional things added to the

list of medical complexities. She has asthma, GERD, laryngomalacia, decreased muscle tone, abnormal


breathing such as breath holding, or hyper ventilation, loss of purposeful hand usage that was traded for

repetitive hand movements and uncontrollable hand mouthing or ringing. No purposeful gross motor,

and very minimal fine motor control. She cannot speak with her voice and also has developed seizures.

She has precocious puberty and slow motility. She has a G tube and a cpap. Zarah has supplemental

oxygen when she sick and takes medications for Parkinson like dystonia. She has a special care plan

when she gets the common cold as it takes her down quickly.


This kid has had ten billion pokes and 5 thousand hospital visits but manages to keep smiling. She is such

a great example of strength and resilience. We couldn’t be prouder of who she has become.

Zarah has learnt how to use an eye gaze communication device and has shown us how very intelligent

and spicy she is, she enjoys math and counting the most at school besides her friends.

She is in grade 2 at St. Marguerite. Zarah has always had a flourishing social life. She attended ready set

go preschool and hopes home daycare. She loves to be around her friends and family. She hates it when

we force her to do anything. She likes all the adventures we go on as a family.

And so you have it Zarah in a nutshell our beautiful wonderful little ray on sunshine, thank you for

reading.


You can find out more to follow us on Instagram @livinglifewithRett or visit www.saskrett.com




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