Prolong Waiswa's life expectancy
Donation protected
Waiswa is an 8 year old boy who has been under the care of Whisper since 2013. Years ago he was diagnosed with Hunter’s Syndrome (or Mucopolysaccharidosis ll), which is a rare condition caused by the deficiency or absence of the IS2 enzyme. When Waiswa was first diagnosed with the condition, the doctors said that he would have a life expectancy of 10. He is now 8, and seems to be deteriorating.
I won’t go into the medical jargon of the condition, but the lack of this enzyme causes complications in breaking down complex molecules, causing the body to collect a buildup of massive amounts of harmful substances. The condition eventually causes permanent damage which affects the appearance, mental development, organ function and physical abilities.
Waiswa is a very smart and beautiful boy. I remember the first time that I realised exactly how cognitively aware he was of his surroundings, was when I was trying to encourage another child to walk, and he told me “aunty, you have to say ‘tambular’” (meaning walk in lusoga). I can sit down and talk with him, he understands and can respond to most of my questions, and is very independent. But from his condition, his muscles have developed distortedly; he cannot stand up straight, walk without a walking stick or frame, or open up his hands to full use. The occupational therapist that has been working with Waiswa weekly for the last few months explained to me that he has never learnt how to breathe using his diaphragm, a skill that most children naturally develop within 6 months after birth. Because of this, as well as the natural deterioration of his condition, he struggles to breathe all the time. He is constantly in physical pain, another attribute of the condition because of developing such contracted muscles.
Unfortunately, it is inevitable that Waiswa will live a shortened life. The condition not only causes issues with physical development throughout early stages of life, but eventually leads to cardiac complications, as well as respiratory, brain and nervous system and skeletal/connective tissue complications.
Hunter’s syndrome is a very, very specific diagnosis, and although he seems to show most of the symptoms for this condition there are many other similar enzyme and metabolic conditions that could also attribute to this. I would like to fully investigate his condition, make sure that he has been diagnosed correctly and find any and all possible treatments that may help to prolong his life, or at the very least help to make him more comfortable. The director of Waiswa’s school recently took him to be examined by a doctor in Jinja who has worked with the condition before, and was able to get a number of referrals to specialists. This is where I need your help. Below are a list of the specialists and tests that I would like to have carried out:
1) Eyes – Waiswa often has trouble keeping his eyes open or forward, and sometimes may have some trouble with his vision.
2) Hearing – Waiswa has lately become a lot less responsive to conversation, regardless of the fact that he seems to be emotionally and socially showing improvement. We would like to have a general hearing test done for him.
3) Eco Cardiagram – As mentioned previously, this condition often leads to cardiac complications
4) Ortho & Breathing – Waiswa shows a lot of signs of difficulties breathing. We would like to have an evaluation done regarding any surgical procedures that may be beneficial in assisting his breathing, as well as an evaluation of spinal compression and kyphoscoliosis.
Similarly to home, specialist appointments don’t always come at a cheap cost. On top of the cost of these tests and evaluations, we will also be required to transport Waiswa to Kampala, the capital city of Uganda where medical treatment is more advanced and accessible.
Considering I have now been volunteering for one year (exactly!), I don’t have the funds required to pay for all of this myself. So while we are in the spirit of giving please donate to helping improve the quality of life for this intelligent and beautiful young boy.
We expect that all initial tests and evaluations will cost roughly $300, plus transport. We also believe that it will be beneficial to Waiswa to purchase a breathing machine, which will cost roughly $1500.
My total target for Waiswa is $2000, so anything that you can give will be greatly appreciated!!
I won’t go into the medical jargon of the condition, but the lack of this enzyme causes complications in breaking down complex molecules, causing the body to collect a buildup of massive amounts of harmful substances. The condition eventually causes permanent damage which affects the appearance, mental development, organ function and physical abilities.
Waiswa is a very smart and beautiful boy. I remember the first time that I realised exactly how cognitively aware he was of his surroundings, was when I was trying to encourage another child to walk, and he told me “aunty, you have to say ‘tambular’” (meaning walk in lusoga). I can sit down and talk with him, he understands and can respond to most of my questions, and is very independent. But from his condition, his muscles have developed distortedly; he cannot stand up straight, walk without a walking stick or frame, or open up his hands to full use. The occupational therapist that has been working with Waiswa weekly for the last few months explained to me that he has never learnt how to breathe using his diaphragm, a skill that most children naturally develop within 6 months after birth. Because of this, as well as the natural deterioration of his condition, he struggles to breathe all the time. He is constantly in physical pain, another attribute of the condition because of developing such contracted muscles.
Unfortunately, it is inevitable that Waiswa will live a shortened life. The condition not only causes issues with physical development throughout early stages of life, but eventually leads to cardiac complications, as well as respiratory, brain and nervous system and skeletal/connective tissue complications.
Hunter’s syndrome is a very, very specific diagnosis, and although he seems to show most of the symptoms for this condition there are many other similar enzyme and metabolic conditions that could also attribute to this. I would like to fully investigate his condition, make sure that he has been diagnosed correctly and find any and all possible treatments that may help to prolong his life, or at the very least help to make him more comfortable. The director of Waiswa’s school recently took him to be examined by a doctor in Jinja who has worked with the condition before, and was able to get a number of referrals to specialists. This is where I need your help. Below are a list of the specialists and tests that I would like to have carried out:
1) Eyes – Waiswa often has trouble keeping his eyes open or forward, and sometimes may have some trouble with his vision.
2) Hearing – Waiswa has lately become a lot less responsive to conversation, regardless of the fact that he seems to be emotionally and socially showing improvement. We would like to have a general hearing test done for him.
3) Eco Cardiagram – As mentioned previously, this condition often leads to cardiac complications
4) Ortho & Breathing – Waiswa shows a lot of signs of difficulties breathing. We would like to have an evaluation done regarding any surgical procedures that may be beneficial in assisting his breathing, as well as an evaluation of spinal compression and kyphoscoliosis.
Similarly to home, specialist appointments don’t always come at a cheap cost. On top of the cost of these tests and evaluations, we will also be required to transport Waiswa to Kampala, the capital city of Uganda where medical treatment is more advanced and accessible.
Considering I have now been volunteering for one year (exactly!), I don’t have the funds required to pay for all of this myself. So while we are in the spirit of giving please donate to helping improve the quality of life for this intelligent and beautiful young boy.
We expect that all initial tests and evaluations will cost roughly $300, plus transport. We also believe that it will be beneficial to Waiswa to purchase a breathing machine, which will cost roughly $1500.
My total target for Waiswa is $2000, so anything that you can give will be greatly appreciated!!
Organizer
Shani Taylor
Organizer
Magill, SA