My name is Shaakira Bodhania, co-founder of PH KIDS SA and mum to 4 amazing children. My journey with PULMONARY HYPERTENSION started in 2012 when my son Mohammed Zaid was diagnosed with this condition. Fatal, the doctors said, but little did we know that we were given the worst news that would change life as we knew it. Sadly, a year later he passed away.
Humayra Bodhania was diagnosed with pulmonary hypertension 3 years ago when she was just 4 years old. A condition that causes the arteries in the lungs to narrow causing the blood flow through the vessels to be under severe pressure making the right side of the heart to enlarge and weaken leading to right heart failure. It surely wasn’t easy to get this diagnosis when just barely a year ago Humayra lost her brother to this dreadful disease. Rare they say …
This invisible illness makes it harder to grasp, in front of you, we see a beautiful young, energetic looking little girl ready to explore the world. When in reality, internally her body is fighting a war. A war that’s unseen to the world. Humayra should be doing the fun things other kids get to do but the simple task of walking short distances or climbing up stairs make her lips go blue, get dizzy and faint.
Sometimes there is no cause for the PH and this is called idiopathic PH. Other times there could be an underlying disease or defect that you may not have known about that causes it.
Symptoms range from shortness of breath to fevers, dizzy spells, fatigue and swelling in your ankles or legs. Now, these may be symptoms of other diseases as well, so doctors would do an echo test and run CT scans to check your arteries.
Treatment may include oxygen therapy, blood thinners, calcium channel blockers and IV medicine which help to lower the blood pressure in your lungs.
Prognosis is just a mere 2-3 years untreated and till today there is no cure. 14 approved meds of which only 1 is available in SA and 1 approved for kids. Many kids are left undiagnosed due to the lack of awareness.
It is for this reason that Ph kids SA was formed. With renewed intentions and great passion to drive this cause home, we are committed to creating awareness and fundraising towards research as well as helping the many families we have come across who are unable to afford treatment that could impact their children’s quality of life.
Please follow us on @ph_kids_sa or call 0610151330 for more info.
Letlotlo has made wonderful progress in Occupational Therapy and has really become such a big boy. He loves to assist taking off his shoes before we start to play and is very decisive regarding what toys and activities he would like to engage with. If he not satisfied with the therapist’s choice, he will let her now. He loves all forms of social play and anything to do with music. He has developed beautiful fine motor skills and the smaller the item he can pick up, post or manipulate the better. We are so proud of him.
The Baby Therapy Centre consists of Physiotherapists, Occupational Therapists and Speech-language therapists who work within a transdisciplinary- or interdisciplinary treatment approach.find out more
The day care facility provides a means for regular therapy for children of working parents.find out more
Therapists regularly visit our outreach site in Mamelodi West.find out more
We aim to answer all the questions you might have about our services and what we offer.find out more