PKU
Mission Statement :
The mission of Hmemsa PKU committee is t bring about positive change in the lives of Moroccan individuals and families affected by PKU. We achieve this through dedicated advocacy, comprehensive education, and the provision of essential resources for effective dietary management.
Phenylketonuria (PKU):
Phenylketonuria (PKU) is a condition in which children lack the gene necessary to create the enzyme needed to break down an amino acid called phenylalanine. The buildup of phenylalanine to dangerous levels leads to severe physical and mental health problems such as brain damage. PKU can be corrected simply by monitoring and administration of a specific diet.
More informations :
English:
https://www.mayoclinic.org/diseases-conditions/phenylketonuria/diagnosis-treatment/drc-20376308
French:
Arabic:
https://www.mayoclinic.org/ar/diseases-conditions/phenylketonuria/symptoms-causes/syc-20376302
The current situation in Morocco regarding diagnosis and treatment of children with PKU is dire:
There is a significant deficit of metabolic formula and low-protein food, along with a lack of specialists for symptom identification, accurate diagnosis, and appropriate PKU treatment for most metabolic diseases.
Newborns are not consistently screened at birth, and the necessary blood tests for monitoring phenylalanine levels are only available at a single public hospital. As a result, children suffer due to the absence of treatment and proper dietary management.
This situation underscores the urgent need for comprehensive improvements in PKU diagnosis and treatment accessibility across Morocco.
Key Objectives:
- We have found a nonprofit organization SOS PKU Maroc led by PKU advocate parents only in Morocco to represent us and coordinate with the government regarding coverage and the shipping process.
- Provide medical supplies, especially metabolic Formula, for these children who are in desperate need to save them, while awaiting recognition of the disease and its insurance coverage.
- Share proven PKU management methods and education to Moroccan doctors, hospitals, and PKU families through webinars, Conference and Camp conducted by American experts and PKU advocates from US.
- Advocate the right of children affected by PKU for the recognition of this condition and its inclusion in the list of chronic disease in Moroccan government (healthcare and insurance coverage).
- Implement Newborn screening: This allows for the early detection of diseases and the timely delivery of life-saving treatments, benefiting both babies and their families.
Accomplishments:
We want to express our profound gratitude to the doctors and dietitians in both the US and Morocco who have supported us since our mission began in November 2019. Initially, we managed the diets of 54 children, and today we continue to assist even more cases, totaling 120.
Through our strengthened collaboration with healthcare professionals and improved care and dietary management, these children's health has significantly improved. They now lead normal lives without any disabilities, crises, or eczema. They can perform everyday activities like walking, talking, and eating without any difficulties.
In 2023, these children have successfully integrated into regular schools, joining their peers.
Project Committee:
Lead- Fatiha Abderraziq
US Team : Yamina Naciri - Mohamed Belkhayat - Wafa Bennani - Abdelhafid ElIdrissi.
Fatiha Abderraziq Message :
I am Fatiha Abderraziq, a mother advocating for PKU patients. Thanks to early diagnosis through newborn screening, my daughter is now very healthy, and this screening undoubtedly saved her life from the moment she was born. As parents, we had never heard of PKU and questioned why this newborn screening wasn't more widely implemented in other countries.
In 2017, we decided to visit our family in Morocco, but our journey took an unfortunate turn when we lost our luggage. This luggage contained all the necessary formula and low-protein foods for my daughter's. This unexpected situation was a tragedy for us, especially when we inquired about PKU testing in Morocco. The results would be available after one month, which was inconvenient for us. We found ourselves in a position where we had to ask friends to send the bloodwork every Tuesday using an airline company in Casablanca. We also had someone pick it up from Washington airport and deliver it to the children's hospital. To make matters worse, nobody in Morocco seemed to be familiar with this rare condition.
We canceled our vacation out of fear that my daughter would face severe mental and physical disabilities. During this time, my husband suggested that I try to find other PKU patients and offer them support.
In November 2019, my niece sent me a video that introduced me to a WhatsApp group of 54 patients who were in desperate need.
On January 4th, 2020, I reached out to a friend who worked at the embassy, Mrs. Khadija, and she connected me with the president of HMEMSA, Mr. Belkhyate, and Mrs. Yamina, who passionately supported the project. When I showed them, a video illustrating the remarkable transformation in PKU patients before and after treatment, it became evident that we had embarked on a significant mission.
I am truly grateful for all the efforts made by all the board members of the HMEMSA organization, the Moroccan Embassy in Washington, and, not to forget, the donors through Facebook, including American PKU moms from across all states, as well as our respectful donor from Casablanca who tirelessly supports these patients since day one. I also want to express my gratitude to the entire Moroccan community living in the US and other countries. Without them, we would never have succeeded in changing the lives of these children. Finding the right words to express my gratitude is challenging, but I extend my deepest appreciation to all of them for giving me the strength to overcome countless challenges and difficulties during our mission to save these children.
I also want to extend a huge thanks to the Moroccan government for their efforts in facilitating the process to recognize PKU as a part of chronic disease and the shipping process into Morocco.
Partners/ Supporters:
- Embassy of Morocco in DC: Supporting the PKU project mission and playing a key role in all our accomplishments.
- SOS PKU Maroc: A non-profit organization of PKU parents based in Fes, Morocco.
- ASAP Consulting: Advocating for the recognition of PKU by the health ministry based in Casablanca, Morocco.
- La Société Marocaine des Maladies Métaboliques (MSSIEM).
PKU Resources:
https://www.mayoclinic.org/diseases-conditions/phenylketonuria/diagnosis-treatment/drc-20376308
https://studylibfr.com/doc/10030189/journée-mondiale-de-la-phénylcétonurie---appel-au-dépista
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